We had a pretty epic day last Saturday. It was just one of those days where the kiddo was himself in the truest form he could be. I'm still laughing about it.
Saturday mornings he plays baseball on his adapted team. This team is actually managed by a couple of friends of mine who have this amazing daughter with Down. She is seriously some awesome stuff, but I digress..... The league was actually thoughtful enough this year to schedule in games with other teams so the kids could actually play a true game (still no score/everybody bats/fields/ect). The kiddo has a real competitive streak in him. He knows how to play and wants everyone to be just as good. The team is a mix of kids from age 5 to 14. We have Autistic, Down Syndrome, MR, a couple I'm not 100% sure on, and even one awesome kiddo in wheelchair. There are about 18 total this year and all but 5 are new. As you know, the kiddo is Autistic and very capable and aware and has been playing for 5 years.
The game started, our kids were up at bat. My kiddo went first. He hit the ball on first pitch then proceeded to run all the bases, escaping the other team (all girls, about 11-12 yrs old), and screaming, "Take that you losers!" as he streaked on by.
Yep. He's my kid alright. :)
He came over, plopped down in his chair next to me and proceeded to chatter on about his hit, yelling at the girls, etc. He's so funny....
Then it was time for the to field. This is where things went a little.... Off? Wrong? Something?
He goes out and does what he usually does. Runs after the ball, takes it from his teammates and runs after whoever is running the bases. Sometimes they humor him (these girls did) sometimes they give him a run for his money (but my kiddo is pretty speedy). He will then hit them with the ball and tell them they are out. It's hilarious!
Not quite what happened for this game... It started off well. But as usual at some point his lesser abled teammates who are new to the game and don't really know how to play, started ticking him off. When a girl made it to base he'd get mad and throw the ball...
After the 2nd or 3rd ball bounce I called him over, told him to not throw the ball anymore, he walked away still rattling off something.... Next batter hit.... Makes it to base.... And his mitt goes flying and bounces off the dirt.
Sigh.... I should have been more specific.
I call him over, tell him to quit throwing things period or I'd pull him from the game (it actually isn't that unusual for me to toss his 80+ pound 4'7 frame over my should and take him off, keep in mind he's 3/4 my size....).
Next batter hits... He runs to get the ball... Hits the outfield and.... slips in the mud and falls. Now he's screaming even louder. He's frustrated and now he's dirty. He HATES being dirty. He starts yelling, "I QUIT, I QUIT!!!"
Then I hear.....
"I FUCKING QUIT!!!"
His one coach and I about split in half. It got reeeeeeeaaaaal quiet. She was standing right next to me and we just kind of looked at each other, hands over our mouths going, "Oh shit......."
Well, he's already walking towards me so I pull him off, sit him down, take the iPad, and tell him he can't say that. I get him somewhat calmed down while the game resumes.
I looked at the coach's dad, who was sitting next to us, and say how I have no idea where he got that word.... Coach's dad looks at me and goes, "Well, at least he used it appropriately."
HAHAHAHAHA!!! I know, right? My kid knows what's up!
Ok, ok. Still not appropriate.... It's hard to yell at him when it's so funny, though. You know?
The kiddo never went back out to field but he did bat again. They only play two innings so the game only lasts about an hour.
On the way home he picked up the iPad and went to use it. I told him he couldn't have it. This is the conversation that ensued:
K: Oh no.... I think I'm grounded off the iPad.
M: Yeah, yeah you are buddy.
K: Do I need to hit my head on the wall? (He's SIB.)
M: I wouldn't recommend it, you might get a headache.
K: But I apologized.
M: I know, and it's good that you did.
K: So why no iPad?
M: Because that wasn't good. Maybe after lunch.
K: After lunch?! (pause) I think I'm hungry for lunch now. Can I have it early? My stomach really needs some lunch now...
Always remorseful after the fact. Gotta love it!
The rest of the ride home was full of apologies, how he was really upset and couldn't help himself (I know, he really couldn't), and how was he ever going to survive without his iPad. I'm happy to report that he survived. He got it back after dinner before heading off to Grandma's for the night.
A day in the life of the kiddo. Never a dull moment!! ;)
Monday, June 10, 2013
Thursday, May 30, 2013
The Day I Lost Him
With all the influx of news of wandering and the abuse the Lynch family is receiving over their precious baby, I can't help but get upset.
Don't judge unless you know. Don't judge unless you've been there. Quit telling Neil Armstrong what it's like to be on the moon.
Ok. Maybe you don't know Mr. Armstrong but it is essentially what is happening.
These kiddos make professional escape artists look like amateurs.
My son wanders. He has along history of elopement from the time he was 2 and could walk off. He knows no fear. He loves water and we happen to live next to a rather giant body of it up here in the northeast corner of the country. So close, in fact, I could throw a rock into one of the Great Lakes. He knows how to swim. He attended the local YMCA for 8 years. His Autistic Support class at school also goes swimming once a week during the year. It's not fool proof, but it's a step in the right direction.
Two years ago, I lost him. Heck, all 5 of us in the house lost him and 3 of them were fireman. We were out in my sister's neck of the woods at her friend's house while sis's husband and the friend's hubby looked at my SUV. My sister, her friend FFK (who was pregnant at the time), me and our collective troop of kiddos hung out in the house. A and I had never been there before, but knew the people who lived there (FFK and her hubby FFM) We were there for a couple of hours without incident.
We were huddled around the kitchen island (the kitchen was an open space with the dining room and living room) while the kids all played in the living room just a couple of feet away. A has always had a love/hate relationship with my nephew Z. It goes way back to when Z was little (he is 2 years younger than A) and how he has ADHD and always wanted to play (he was a bit too intense for A) and A very much wanted to be left be. Naturally.
Some type of altercation happened between A and Z and both got yelled at by me. One was put on one couch, the other was put on another couch, and time out ensued. A was seething. At this point I don't recall what happened or why he was mad. But the kiddo was very upset (part of the reason for the time out, to help him calm down).
Then it happened. No warning. No sound. It just happened. I blinked and he disappeared. My sister said something to me, I turned to answer, when I turned back just a few seconds later, he was missing. I figured he went to the bathroom or went to another room to get away from Z. A quick bathroom check... No. So we check the room downstairs... No. Garage... No. Well, crap... We go outside.
He's nowhere to be seen. We had been calling his name but he is not answering (he was capable).
5 minutes....
We check the pool. We check the house again, around furniture, closets, under the couch (seriously, you'd be surprised where they'll squeeze into), the bedrooms. Nothing. I go back outside while FFK continues to search the house. My sister joins me shortly after. (FFM and BIL- also a FF- are out in my car test driving it). We walk around the house and check the neighbor's yards, calling his name. Nothing.
10 minutes....
Panic sets in. Where is my son? Why won't he answer? How far could he have traveled? I can see across the fields surrounding the house and I see nothing. The forests (we were in the countryside) are beyond the fields on each side. A major roadway is off to the north. Could he have made it to the woods that quickly? Could someone have picked him up off the road that soon? I start walking. I'm screaming his name...
15 minutes....
Still nothing. FFK is still searching the house. Since she's pregnant she got left to mind the house and kids and watch to see if he comes back. She keeps searching the house. My sister is traveling in the opposite direction of me. She spots her husband on the roadway but can't reach him, he's too far and cell service is bad in the area. Should I call the police? Will they think I'm a bad mother? Where is my son? Why did he run away from me? Could he have made it to the woods? What if he get's hurt? What if we can't find him? He'll never survive the night alone...
20 minutes...
I'm in a full panic. I get a text message out to M. He can't get to me but asks me to keep him posted. Grandma has been called (I don't remember by who). She's out of town so she can't help. I'm still screaming my son's name. Walking across the field towards a baseball field. Is he hiding in the dugout? Why won't he answer? Where is he? Why? Why? Why?
25 minutes...
M asks for an update. Still nothing. I'm still walking. Screaming. Now I'm crying. Should I call the police? Search and rescue? What if they say I'm a bad mother? What if they take him away from me? I'm with the very firemen who would search for him... If BIL wants to bring in reinforcements, ok. I love my son! I am a good mother! Why did he run off on me?
30 minutes...
I'm crying. I'm hoarse. I can barely get his name across my lips. I'm still walking. Still searching. Sobbing. Where can he be? Is he in the woods? Why won't he answer? Did someone take him? He'll never survive the night.... My mind is racing with grotesque images and every worst case scenario... Wolves.... Bears... Creeks.... Strangers....
35 minutes...
M messages me again. Do I need him? He's still delayed. Sis gets BIL. BIL and FFM start driving around the roadways looking for him, they hadn't seen him yet. FFK says he's still not around the house. Another friend joins the search and goes another direction. I can barely yell his name. Grief has taken over. Am I a bad mother? No! Stop thinking that!
40 minutes...
I can barely move. I can't see through my tears. I'm still walking... I'm on the verge of becoming a useless heap in someone's field. Where is my son? Why can't we find him? BIL doesn't see him on the roads. They keep looking. He'll never survive the night... Will they take my son away? Why did he do this? Why did he run? Where is he? Why can't I find him?
45 minutes...
I'm in the field. I can't move. I can't see. I could have been crawling at that point for all I know. Panic and grief have completely taken over... I'm lost. I feel hopeless. I feel like he's gone...
Suddenly I hear my name. The friend who joined the search is running towards me with the house phone. He's yelling. Running full speed to me.
They found him.
Words cannot describe how I felt. Where did they find him? Is he ok? Why did he do it?
I flew back to the house... I was completely overcome with a mix of relief, joy, and (I admit) anger.
Sheer luck brought him back to me. Yes, I said it, LUCK. FFK found him when she caught him sneaking back into the house.
I hugged him. I hugged the stuffing out of that kid. I'm pretty sure I hugged him so tight his eyes were threatening to pop out of his head. I cried some more. I asked him why he didn't answer me, why he didn't respond when he heard his name. I was angry. I was upset. I was hurt. He sat there, mute, unanswering. He didn't know why. Or at least (as I understand now) he had no way to tell me. He knew what he did. You could see it in his eyes. He kept saying he was sorry. He cried.
He was within 2 steps of me for the next 2 hours until we left. He had to remain within eyesight of me. Two.Steps.Away at most. This did mean he spent a considerable portion of his afternoon sitting on the garage floor.
Two years later, I know. I understand. He was mad. He was upset. He wanted to get away from being upset. So he walked off. He was taking a break in his mind. Escaping.
You think it won't happen to you, but then it does. We no longer have time outs. We now have time ins. If you don't know what that is, it's the exact opposite of a time out. Instead of him going to a corner or couch, he sits right next to me. Literally. Until I say he can go, he's stuck hip to hip with me. Time outs are too dangerous now.
To this day he still wanders but nothing like that day. I am lucky in that. Grateful even. He is now afraid of losing me (not sure why but I'm not going to argue the result). He now keeps me within eyesight.
Locks have been installed (see previous post here) and continuous measures have been taken. I am constantly adjusting as he ages and gets bigger, more independent in ability and thinking. I honestly don't know what I will do when he's bigger than me and older. What will I do when I can no longer force him to hold my hand? I can't harness him. He won't fit into a stroller. I dread those days to come.
The fear remains. It's ever constant. I am hyper-vigilant. I have to be. I became the helicopter parent I never thought I'd have to be. The fear never leaves me. The store. School. Grandma's house. M's house. Aunt's house. It.Never.Leaves.
I will do what I need to in order to keep my precious baby safe.
Rest in peace Mikaela Lynch, Owen Black, Andrew Howell, and Freddie Williams. Angels taken from us far too soon.
Big Red Safety Box
Project Lifesaver
Autism Wandering and Elopement Initiative
Don't judge unless you know. Don't judge unless you've been there. Quit telling Neil Armstrong what it's like to be on the moon.
Ok. Maybe you don't know Mr. Armstrong but it is essentially what is happening.
These kiddos make professional escape artists look like amateurs.
My son wanders. He has along history of elopement from the time he was 2 and could walk off. He knows no fear. He loves water and we happen to live next to a rather giant body of it up here in the northeast corner of the country. So close, in fact, I could throw a rock into one of the Great Lakes. He knows how to swim. He attended the local YMCA for 8 years. His Autistic Support class at school also goes swimming once a week during the year. It's not fool proof, but it's a step in the right direction.
Two years ago, I lost him. Heck, all 5 of us in the house lost him and 3 of them were fireman. We were out in my sister's neck of the woods at her friend's house while sis's husband and the friend's hubby looked at my SUV. My sister, her friend FFK (who was pregnant at the time), me and our collective troop of kiddos hung out in the house. A and I had never been there before, but knew the people who lived there (FFK and her hubby FFM) We were there for a couple of hours without incident.
We were huddled around the kitchen island (the kitchen was an open space with the dining room and living room) while the kids all played in the living room just a couple of feet away. A has always had a love/hate relationship with my nephew Z. It goes way back to when Z was little (he is 2 years younger than A) and how he has ADHD and always wanted to play (he was a bit too intense for A) and A very much wanted to be left be. Naturally.
Some type of altercation happened between A and Z and both got yelled at by me. One was put on one couch, the other was put on another couch, and time out ensued. A was seething. At this point I don't recall what happened or why he was mad. But the kiddo was very upset (part of the reason for the time out, to help him calm down).
Then it happened. No warning. No sound. It just happened. I blinked and he disappeared. My sister said something to me, I turned to answer, when I turned back just a few seconds later, he was missing. I figured he went to the bathroom or went to another room to get away from Z. A quick bathroom check... No. So we check the room downstairs... No. Garage... No. Well, crap... We go outside.
He's nowhere to be seen. We had been calling his name but he is not answering (he was capable).
5 minutes....
We check the pool. We check the house again, around furniture, closets, under the couch (seriously, you'd be surprised where they'll squeeze into), the bedrooms. Nothing. I go back outside while FFK continues to search the house. My sister joins me shortly after. (FFM and BIL- also a FF- are out in my car test driving it). We walk around the house and check the neighbor's yards, calling his name. Nothing.
10 minutes....
Panic sets in. Where is my son? Why won't he answer? How far could he have traveled? I can see across the fields surrounding the house and I see nothing. The forests (we were in the countryside) are beyond the fields on each side. A major roadway is off to the north. Could he have made it to the woods that quickly? Could someone have picked him up off the road that soon? I start walking. I'm screaming his name...
15 minutes....
Still nothing. FFK is still searching the house. Since she's pregnant she got left to mind the house and kids and watch to see if he comes back. She keeps searching the house. My sister is traveling in the opposite direction of me. She spots her husband on the roadway but can't reach him, he's too far and cell service is bad in the area. Should I call the police? Will they think I'm a bad mother? Where is my son? Why did he run away from me? Could he have made it to the woods? What if he get's hurt? What if we can't find him? He'll never survive the night alone...
20 minutes...
I'm in a full panic. I get a text message out to M. He can't get to me but asks me to keep him posted. Grandma has been called (I don't remember by who). She's out of town so she can't help. I'm still screaming my son's name. Walking across the field towards a baseball field. Is he hiding in the dugout? Why won't he answer? Where is he? Why? Why? Why?
25 minutes...
M asks for an update. Still nothing. I'm still walking. Screaming. Now I'm crying. Should I call the police? Search and rescue? What if they say I'm a bad mother? What if they take him away from me? I'm with the very firemen who would search for him... If BIL wants to bring in reinforcements, ok. I love my son! I am a good mother! Why did he run off on me?
30 minutes...
I'm crying. I'm hoarse. I can barely get his name across my lips. I'm still walking. Still searching. Sobbing. Where can he be? Is he in the woods? Why won't he answer? Did someone take him? He'll never survive the night.... My mind is racing with grotesque images and every worst case scenario... Wolves.... Bears... Creeks.... Strangers....
35 minutes...
M messages me again. Do I need him? He's still delayed. Sis gets BIL. BIL and FFM start driving around the roadways looking for him, they hadn't seen him yet. FFK says he's still not around the house. Another friend joins the search and goes another direction. I can barely yell his name. Grief has taken over. Am I a bad mother? No! Stop thinking that!
40 minutes...
I can barely move. I can't see through my tears. I'm still walking... I'm on the verge of becoming a useless heap in someone's field. Where is my son? Why can't we find him? BIL doesn't see him on the roads. They keep looking. He'll never survive the night... Will they take my son away? Why did he do this? Why did he run? Where is he? Why can't I find him?
45 minutes...
I'm in the field. I can't move. I can't see. I could have been crawling at that point for all I know. Panic and grief have completely taken over... I'm lost. I feel hopeless. I feel like he's gone...
Suddenly I hear my name. The friend who joined the search is running towards me with the house phone. He's yelling. Running full speed to me.
They found him.
Words cannot describe how I felt. Where did they find him? Is he ok? Why did he do it?
I flew back to the house... I was completely overcome with a mix of relief, joy, and (I admit) anger.
Sheer luck brought him back to me. Yes, I said it, LUCK. FFK found him when she caught him sneaking back into the house.
I hugged him. I hugged the stuffing out of that kid. I'm pretty sure I hugged him so tight his eyes were threatening to pop out of his head. I cried some more. I asked him why he didn't answer me, why he didn't respond when he heard his name. I was angry. I was upset. I was hurt. He sat there, mute, unanswering. He didn't know why. Or at least (as I understand now) he had no way to tell me. He knew what he did. You could see it in his eyes. He kept saying he was sorry. He cried.
He was within 2 steps of me for the next 2 hours until we left. He had to remain within eyesight of me. Two.Steps.Away at most. This did mean he spent a considerable portion of his afternoon sitting on the garage floor.
Two years later, I know. I understand. He was mad. He was upset. He wanted to get away from being upset. So he walked off. He was taking a break in his mind. Escaping.
You think it won't happen to you, but then it does. We no longer have time outs. We now have time ins. If you don't know what that is, it's the exact opposite of a time out. Instead of him going to a corner or couch, he sits right next to me. Literally. Until I say he can go, he's stuck hip to hip with me. Time outs are too dangerous now.
To this day he still wanders but nothing like that day. I am lucky in that. Grateful even. He is now afraid of losing me (not sure why but I'm not going to argue the result). He now keeps me within eyesight.
Locks have been installed (see previous post here) and continuous measures have been taken. I am constantly adjusting as he ages and gets bigger, more independent in ability and thinking. I honestly don't know what I will do when he's bigger than me and older. What will I do when I can no longer force him to hold my hand? I can't harness him. He won't fit into a stroller. I dread those days to come.
The fear remains. It's ever constant. I am hyper-vigilant. I have to be. I became the helicopter parent I never thought I'd have to be. The fear never leaves me. The store. School. Grandma's house. M's house. Aunt's house. It.Never.Leaves.
I will do what I need to in order to keep my precious baby safe.
Rest in peace Mikaela Lynch, Owen Black, Andrew Howell, and Freddie Williams. Angels taken from us far too soon.
Big Red Safety Box
Project Lifesaver
Autism Wandering and Elopement Initiative
Sunday, May 26, 2013
The Wandering Blockade
I'm not even going to sugar coat it. I rarely do anyway. So...
Over half of all Autistic children wander. HALF.
It's a sobering statistic that over 90% of those children who lose their lives, drown.
It's kind of frightening really. Terrifying.
I have nightmares about it, especially this time of year.
My son is one who wanders.
When he was 5, I got him a medic alert bracelet with "Autism" engraved on the front. (It has since worn off but I'm afraid to take it off to get it re-engraved.) On the other side is his name, my name and relation, my cell phone number, and the instruction that he may not understand verbal commands. It is fitted with a special clasp that I can't even get off without the use of two pairs of pliers.
It is a reality that so many of us face. Our day to day lives are spent being the ultimate helicopter parent because, well, we HAVE to be. We don't have a choice. We can't take our eyes off of our child for fear (FEAR) that they will wander off and be lost. It isn't a parenting thing. It's an Autistic thing.
We spend hours installing and reinstalling locks and alarms on the windows and doors so that our child cannot escape and so that in case some window or door is opened, we are immediately alerted to such an event so we can rush to the scene and make our assessment.
My son knows no fear. He doesn't really think anything bad can happen. He is the epitome of childhood innocence.
I have often joked that if the house ever catches on fire, God help us because we won't be able to get out. The problem is, I'm not actually joking.
Front door (the door itself remains bolted):
Side (and main door we use, also remains bolted):
Back (sliding door, this is actually the second alarm I've had installed here, it is usually locked when I don't have it open for the summer breeze but it doesn't work well):
A note that can be found on all three doors to my house (he is an excellent reader):
Kitchen (which leads to the side door and basement), note all the screw holes. I can't tell you how many of these locks have been broken in the 6 years we've lived in this house. (He has since learned to climb on something to open the lock...)
The 1x1 board that prevents the sliding back door from opening:
The lock in the track that prevents the sliding door from opening when engaged:
My fenced in yard:
The gate to my fenced in yard, which used to have a bungee wrapped around it. He was able to undo it when he was 6. Now I rely on a 6 foot pole driven into the ground...
My front door blockade, complete with a note in the window warning people to not use this door:
And for good measure: the attic. Yes we actually have a door to our attic. It even has stairs on the other side to up into the attic. It also has plywood boards that make up the floor over the insulation and has and endless supply of rusty nails protruding a good 2 inches holding the roof down (he's only ever opened it once)....
I used to use door knob covers. He can defeat them. Could when he was 4. FOUR. No regular child safety anything works with him. The door alarms will beep and tell me which door is being opened and they are part of my fancy house alarm system. The house alarm is on any time I am asleep. ANY. (Let's face it, I have to sleep sometime, even if he doesn't, and I'm a single mom so...)
The only way we have to beat the drowning statistic is the 8 years he spent at the YMCA learning to swim. This kid can swim better than most people I know, including me. We live a stone's throw from one of the Great Lakes and who knows how many swimming pools. It was a must and my #1 investment so far. Is it foolproof? No. But it's the best I can do here.
Up until recently I drove a small sports car with only 2 doors and crammed him into the back seat so he couldn't get out. My current car is an SUV that has child locks built into the door.
I can't leave anything to chance. If I do, it will surely mean potential disaster.
To date, (knock on wood) the only time I have ever lost him to wandering was somewhere other than home. The longest he's ever been lost is 45 minutes. Forty-five harrowing, panic-filled minutes of absolute dread. It was someplace we had never been. The only reason, ONLY reason, we found him after 45 minutes, is because by sheer LUCK he snuck back in the house where we were staying. LUCK that HE decided to wander back. (This is a post for another day though.)
He still wanders off at grandma's house, the store, the beach, school, camp, wherever. He gets curious, distracted, bored, or scared and just goes. Completely oblivious to the panic and fear he's left behind in those search for him.
He is always an arms length away. If we are in a crowded place or parking lot, you can bet I have a white knuckled grip on him.
It is a necessity. It is life. It is what is required to keep my precious boy safe.
Big Red Safety Box
Project Lifesaver
Autism Wandering and Elopement Initiative
Over half of all Autistic children wander. HALF.
It's a sobering statistic that over 90% of those children who lose their lives, drown.
It's kind of frightening really. Terrifying.
I have nightmares about it, especially this time of year.
My son is one who wanders.
When he was 5, I got him a medic alert bracelet with "Autism" engraved on the front. (It has since worn off but I'm afraid to take it off to get it re-engraved.) On the other side is his name, my name and relation, my cell phone number, and the instruction that he may not understand verbal commands. It is fitted with a special clasp that I can't even get off without the use of two pairs of pliers.
It is a reality that so many of us face. Our day to day lives are spent being the ultimate helicopter parent because, well, we HAVE to be. We don't have a choice. We can't take our eyes off of our child for fear (FEAR) that they will wander off and be lost. It isn't a parenting thing. It's an Autistic thing.
We spend hours installing and reinstalling locks and alarms on the windows and doors so that our child cannot escape and so that in case some window or door is opened, we are immediately alerted to such an event so we can rush to the scene and make our assessment.
My son knows no fear. He doesn't really think anything bad can happen. He is the epitome of childhood innocence.
I have often joked that if the house ever catches on fire, God help us because we won't be able to get out. The problem is, I'm not actually joking.
Front door (the door itself remains bolted):
Side (and main door we use, also remains bolted):
Back (sliding door, this is actually the second alarm I've had installed here, it is usually locked when I don't have it open for the summer breeze but it doesn't work well):
A note that can be found on all three doors to my house (he is an excellent reader):
Kitchen (which leads to the side door and basement), note all the screw holes. I can't tell you how many of these locks have been broken in the 6 years we've lived in this house. (He has since learned to climb on something to open the lock...)
The 1x1 board that prevents the sliding back door from opening:
The lock in the track that prevents the sliding door from opening when engaged:
The gate to my fenced in yard, which used to have a bungee wrapped around it. He was able to undo it when he was 6. Now I rely on a 6 foot pole driven into the ground...
My front door blockade, complete with a note in the window warning people to not use this door:
And for good measure: the attic. Yes we actually have a door to our attic. It even has stairs on the other side to up into the attic. It also has plywood boards that make up the floor over the insulation and has and endless supply of rusty nails protruding a good 2 inches holding the roof down (he's only ever opened it once)....
I used to use door knob covers. He can defeat them. Could when he was 4. FOUR. No regular child safety anything works with him. The door alarms will beep and tell me which door is being opened and they are part of my fancy house alarm system. The house alarm is on any time I am asleep. ANY. (Let's face it, I have to sleep sometime, even if he doesn't, and I'm a single mom so...)
The only way we have to beat the drowning statistic is the 8 years he spent at the YMCA learning to swim. This kid can swim better than most people I know, including me. We live a stone's throw from one of the Great Lakes and who knows how many swimming pools. It was a must and my #1 investment so far. Is it foolproof? No. But it's the best I can do here.
Up until recently I drove a small sports car with only 2 doors and crammed him into the back seat so he couldn't get out. My current car is an SUV that has child locks built into the door.
I can't leave anything to chance. If I do, it will surely mean potential disaster.
To date, (knock on wood) the only time I have ever lost him to wandering was somewhere other than home. The longest he's ever been lost is 45 minutes. Forty-five harrowing, panic-filled minutes of absolute dread. It was someplace we had never been. The only reason, ONLY reason, we found him after 45 minutes, is because by sheer LUCK he snuck back in the house where we were staying. LUCK that HE decided to wander back. (This is a post for another day though.)
He still wanders off at grandma's house, the store, the beach, school, camp, wherever. He gets curious, distracted, bored, or scared and just goes. Completely oblivious to the panic and fear he's left behind in those search for him.
He is always an arms length away. If we are in a crowded place or parking lot, you can bet I have a white knuckled grip on him.
It is a necessity. It is life. It is what is required to keep my precious boy safe.
Big Red Safety Box
Project Lifesaver
Autism Wandering and Elopement Initiative
Tuesday, April 30, 2013
Completely Helpless...
Last night I had dress rehearsal for my show. I was hoping for the best but ended up with one of those situations that I dread being caught in...
Since I couldn't take the kiddo with me and M was up he stayed home with him. We started new data so I talked him through what to do and and wished him luck with homework. I was out the door by 6:20pm. I didn't really anticipate anything major happening. As you know, M and A are two peas in a pod and have a lot of fun together. I figured the kiddo would protest his homework a bit as he always does with me but still do it. I knew M would be able to easily deal with any behaviors and fuss he put forth so I wasn't worried. The kiddo hates homework...
It all started with a text message at 7:06 from M:
We hadn't started yet as we were still waiting for the newspaper to show up to take pictures so I got the message pretty quick:
That didn't go over well.... I am stunned by the reaction...
Did you hear the crack? Pretty sure my heart just split in two... Of course there was no way for me to get to him either so I was left fretting and trying to figure out what to do from where I was. I kept telling myself M had everything in hand and tried to keep from entering freak-out mode...
What felt like an eternity later:
Crap... I have no idea where to go from here. It doesn't appear he's calming down at all and I'm still stuck. I'm afraid to let him off the homework hook (and in a sense giving him negative (avoidance) reinforcement to do this again tomorrow) but I don't want to drive him too far. The decision ultimately falls to me so...
That's right. Mommy gave up the fight. I knew we needed to get the kiddo calmed down asap. Everything is lost once things start flying. I then asked if anything was broken, since I'm an idiot and have antiques out... But in my defense, things rarely get broken and the cat broke the last antique that bit the dust...
Did you hear that? Yep. My heart cracked again.... Him hiding is usually indicative of worse behaviors to come (or a complete surrender, it's 50/50 but I wasn't home...) so I had to ask if there was any SIBs.... Then naturally freaked out in the process....
*corrected to him not home (Autocorrect got him, haha!)
During this time and the following hour I kept running to the dressing room between scenes to check my phone for the latest updates on what is going on. I felt like a crazy woman rushing around, concerned and distracted by what my son is going through and trying to focus on my lines. It was very difficult to do. As you can imagine, it is quite the distraction.
Around 8:13 pm I received this email:
You can see the picture of the homework page he wanted help with and his request for my help. Since the theater is in an old school and is also a nuclear fallout shelter (comforting, no?) I have no idea what time he actually sent it. Signal is really bad in that building....
After A had calmed down, order was restored and he settled to have a snack and snuggle in on the couch. When I came home M told me that the kiddo was so worn out that he fell asleep on the couch early (bedtime is 9) and he carried him up. I went up to check on him and he was sleeping away.
This morning when the kiddo woke up he came and snuggled in. There was no hint of the upset from last night. My only clue that something was ever amiss was that he was slightly clingy and actually snuggled in this morning. Usually he sits on the bed somewhere and asks for the iPad. There were lots of hugs too. He was quite happy when I dropped him off at school this morning.
We are a little baffled by what made him go over the edge like this. Unfortunately there is no way to really know. The only thing we can suspect is that he's been a little more anxious lately. Hopefully tonight will go a little more easily.
I can hope right? :)
Since I couldn't take the kiddo with me and M was up he stayed home with him. We started new data so I talked him through what to do and and wished him luck with homework. I was out the door by 6:20pm. I didn't really anticipate anything major happening. As you know, M and A are two peas in a pod and have a lot of fun together. I figured the kiddo would protest his homework a bit as he always does with me but still do it. I knew M would be able to easily deal with any behaviors and fuss he put forth so I wasn't worried. The kiddo hates homework...
It all started with a text message at 7:06 from M:
We hadn't started yet as we were still waiting for the newspaper to show up to take pictures so I got the message pretty quick:
That didn't go over well.... I am stunned by the reaction...
Did you hear the crack? Pretty sure my heart just split in two... Of course there was no way for me to get to him either so I was left fretting and trying to figure out what to do from where I was. I kept telling myself M had everything in hand and tried to keep from entering freak-out mode...
What felt like an eternity later:
Crap... I have no idea where to go from here. It doesn't appear he's calming down at all and I'm still stuck. I'm afraid to let him off the homework hook (and in a sense giving him negative (avoidance) reinforcement to do this again tomorrow) but I don't want to drive him too far. The decision ultimately falls to me so...
That's right. Mommy gave up the fight. I knew we needed to get the kiddo calmed down asap. Everything is lost once things start flying. I then asked if anything was broken, since I'm an idiot and have antiques out... But in my defense, things rarely get broken and the cat broke the last antique that bit the dust...
Did you hear that? Yep. My heart cracked again.... Him hiding is usually indicative of worse behaviors to come (or a complete surrender, it's 50/50 but I wasn't home...) so I had to ask if there was any SIBs.... Then naturally freaked out in the process....
Then because I can be a jerk sometimes he added:
*corrected to him not home (Autocorrect got him, haha!)
During this time and the following hour I kept running to the dressing room between scenes to check my phone for the latest updates on what is going on. I felt like a crazy woman rushing around, concerned and distracted by what my son is going through and trying to focus on my lines. It was very difficult to do. As you can imagine, it is quite the distraction.
Around 8:13 pm I received this email:
You can see the picture of the homework page he wanted help with and his request for my help. Since the theater is in an old school and is also a nuclear fallout shelter (comforting, no?) I have no idea what time he actually sent it. Signal is really bad in that building....
After A had calmed down, order was restored and he settled to have a snack and snuggle in on the couch. When I came home M told me that the kiddo was so worn out that he fell asleep on the couch early (bedtime is 9) and he carried him up. I went up to check on him and he was sleeping away.
This morning when the kiddo woke up he came and snuggled in. There was no hint of the upset from last night. My only clue that something was ever amiss was that he was slightly clingy and actually snuggled in this morning. Usually he sits on the bed somewhere and asks for the iPad. There were lots of hugs too. He was quite happy when I dropped him off at school this morning.
We are a little baffled by what made him go over the edge like this. Unfortunately there is no way to really know. The only thing we can suspect is that he's been a little more anxious lately. Hopefully tonight will go a little more easily.
I can hope right? :)
Sunday, April 21, 2013
My Guest Post - The Toughest I've Ever Written
I was asked to write a piece as a guest post on the fantastic blog Find My Eyes. It was a very tough piece to write but one we feel needed to be written. For those of you not on FaceBook I felt I needed to link it here so that you could also view it. I was honored to write this piece for him and am grateful for the opportunity to bring this voice out.
He has been doing a fantastic thing this month where he has 30 days of guest blogs from fans, family, and fellow bloggers. It is a wonderful project that has brought out many great voices. I recommend that you go read some of these posts (as well as his other fabulous stuff!) and see what great things have been written in honor of our Autistic kiddos. (You can find his blog at the link above.)
Without further ado, I present his Find My Eyes FaceBook teaser and the link:
He has been doing a fantastic thing this month where he has 30 days of guest blogs from fans, family, and fellow bloggers. It is a wonderful project that has brought out many great voices. I recommend that you go read some of these posts (as well as his other fabulous stuff!) and see what great things have been written in honor of our Autistic kiddos. (You can find his blog at the link above.)
Without further ado, I present his Find My Eyes FaceBook teaser and the link:
Thursday, April 11, 2013
Theatre Baby!
Yesterday I got to confuse the bejeebies out of of the family based team. I told them and our BSC rather casually that he would be going to rehearsal with me that night. My BSC didn't flinch. The FB team did. They both stared at me like deer caught in headlights.
Skeptically, "How does that go?"
Me: Just fine.
"You mean he sits quietly?"
"Wait, he doesn't come looking for you when he needs something?"
"He just sits and does his own thing?"
"How does he know to do that?"
"He just knows when he can talk to you and when he can't (when onstage)?"
"You have never had an issue with him disrupting anything?"
Best.Day.Ever.
No my kid isn't the out of control monster you seem to think he is. Nor am I this totally ineffective mother who can't do jack to teach her child appropriate mannerisms.
My response to their questioning was so simple, "He literally grew up in theater. He just knows."
Those of you who know my story know that I have B.A. in Theater. I had my son during this time and took him back to college with me. There are many stories of the kiddo doing some thing or other in the theater spaces, backstage, shops, etc. I would set him down and he'd disappear as one of his adopted 150 aunts and uncles would whisk him away to play.
His greatest moment was when I was doing the Costume Design for Candide and he slipped away, toddled up on stage (in the middle of rehearsal), interrupted everyone, and started pointing his chubby little finger and gave his own stage directions. The director (my mentor) nearly fell out of his chair laughing.
He grew up in theater.
He knows when the lights are down, you are quiet.
He knows when the curtains 'fall', you clap.
He knows when Mommy is on stage, she is unavailable.
He also somehow intuitively knows when we take breaks, even if we are still on stage, and will come on up to ask his question then.
He knows to never leave the space. If he needs to, he will find an adult he knows and ask for help.
He is loved in my theater circles.
He even got to be the voice of the little boy when I did Death of a Salesman a couple years ago.
He'll get the autographs of all the ladies on the program.
He lives for it. He knows it. He loves it.
I recall another time when we were rehearsing and on a break when he did a little Charlie Chapman dance routine, complete with hat and cane.
And another time when he gave directions to a lovely friend of mine on some dance moves. She went along with him laughing all the while (I think there may be video evidence of this one...).
During shows, if he has to come with me, he sits quietly off-stage in the back corner, watches a movie and draws. If he needs to leave the green room for any reason, he knows which adult to ask for help (don't ask me how me hows stage appearance order, but he does) and they are more than happy to help.
Autistic or not, when you grow up with something, something with definite rules and boundaries, they become second nature to you. You just know. You just do.
So tonight when we go to rehearsal again, I know just where he will be. Sitting 3 rows back, left side (down stage right), 2nd seat in, playing on his iPad and munching on Cheetos.
He is my theater baby. :)
Playing in the wood shop....
In the green room with Mommy...
In the dressing room while Mommy directed the Wardrobe crew. (He loved Brandon's spot the most!)
This mannequin in the Costume Shop brought him great joy.
Skeptically, "How does that go?"
Me: Just fine.
"You mean he sits quietly?"
"Wait, he doesn't come looking for you when he needs something?"
"He just sits and does his own thing?"
"How does he know to do that?"
"He just knows when he can talk to you and when he can't (when onstage)?"
"You have never had an issue with him disrupting anything?"
Best.Day.Ever.
No my kid isn't the out of control monster you seem to think he is. Nor am I this totally ineffective mother who can't do jack to teach her child appropriate mannerisms.
My response to their questioning was so simple, "He literally grew up in theater. He just knows."
Those of you who know my story know that I have B.A. in Theater. I had my son during this time and took him back to college with me. There are many stories of the kiddo doing some thing or other in the theater spaces, backstage, shops, etc. I would set him down and he'd disappear as one of his adopted 150 aunts and uncles would whisk him away to play.
His greatest moment was when I was doing the Costume Design for Candide and he slipped away, toddled up on stage (in the middle of rehearsal), interrupted everyone, and started pointing his chubby little finger and gave his own stage directions. The director (my mentor) nearly fell out of his chair laughing.
He grew up in theater.
He knows when the lights are down, you are quiet.
He knows when the curtains 'fall', you clap.
He knows when Mommy is on stage, she is unavailable.
He also somehow intuitively knows when we take breaks, even if we are still on stage, and will come on up to ask his question then.
He knows to never leave the space. If he needs to, he will find an adult he knows and ask for help.
He is loved in my theater circles.
He even got to be the voice of the little boy when I did Death of a Salesman a couple years ago.
He'll get the autographs of all the ladies on the program.
He lives for it. He knows it. He loves it.
I recall another time when we were rehearsing and on a break when he did a little Charlie Chapman dance routine, complete with hat and cane.
And another time when he gave directions to a lovely friend of mine on some dance moves. She went along with him laughing all the while (I think there may be video evidence of this one...).
During shows, if he has to come with me, he sits quietly off-stage in the back corner, watches a movie and draws. If he needs to leave the green room for any reason, he knows which adult to ask for help (don't ask me how me hows stage appearance order, but he does) and they are more than happy to help.
Autistic or not, when you grow up with something, something with definite rules and boundaries, they become second nature to you. You just know. You just do.
So tonight when we go to rehearsal again, I know just where he will be. Sitting 3 rows back, left side (down stage right), 2nd seat in, playing on his iPad and munching on Cheetos.
He is my theater baby. :)
Playing in the wood shop....
In the green room with Mommy...
In the dressing room while Mommy directed the Wardrobe crew. (He loved Brandon's spot the most!)
This mannequin in the Costume Shop brought him great joy.
Thursday, April 4, 2013
We adjust. We adapt. We overcome.
Often when we talk about our lives with Autism we keep it sunny. We try to show the lighter side. We are hesitant to share the dark moments, the negativity, the trials, the tribulations, the tears.
We are afraid.
We feel hopeless.
We don't want the "stigma."
The reality is, we face some pretty hard stuff with our kiddos.
We deal with self-injurious behaviors. We deal with aggression. We deal with meltdowns. We get hit, punched, bruised, and cry. Sometimes it's a rare occurrence. Sometimes, it can be daily.
It isn't often that anyone speaks about it. Often, when someone does they are criticized and called horrible parents. Those that judge are those who have no idea. They have no experience. They have no understanding. Or, if they have kiddos on the spectrum, they are in a deep state of denial that they cannot possibly admit that they sometimes feel like failures. That they too, do these things and feel what they feel. No one wants to admit that it can happen to them.
We try to know all the answers. We pretend. We fight. We put up a strong front.
I don't care who you are. Mom. Dad. Grandma. Grandpa. Aunt. Uncle. Sibling. Friend. You do it too.
This is the voice that is lost. This is what we are missing. This is the part of our journey through the adventure of life that can help others not feel like an island.
Don't get me wrong here, though. Are things often fantastic? Yes. Do we love our children unconditionally? Yes. Do we accept them and love them as they are for all their quirks and hardships? You betcha. Would we change them? In my case, absolutely not.
But surely the world cannot expect that our children do not misbehave. That they do not have meltdowns (not the same as tantrums!). That they do not have off moments.
That would be as lacking as the assumption that they are not loving, fun, enjoyable, creative, little human beings with a ton of love and happiness to share.
My son loves to be happy. He strives to please. He's very creative. He's even working on the 4th book in his little chapter book series. He is the most loving child I know. He wants to snuggle, play, dote on the cats, and create. He is a great inventor after all. :)
But even we have our off moments. Our not so sunny days. It would be wrong to deny us that admission. It would be wrong to judge us differently or more harshly as a result of it. We aren't any different. We just have different trials.
We adjust. We adapt. We overcome.
We are afraid.
We feel hopeless.
We don't want the "stigma."
The reality is, we face some pretty hard stuff with our kiddos.
We deal with self-injurious behaviors. We deal with aggression. We deal with meltdowns. We get hit, punched, bruised, and cry. Sometimes it's a rare occurrence. Sometimes, it can be daily.
It isn't often that anyone speaks about it. Often, when someone does they are criticized and called horrible parents. Those that judge are those who have no idea. They have no experience. They have no understanding. Or, if they have kiddos on the spectrum, they are in a deep state of denial that they cannot possibly admit that they sometimes feel like failures. That they too, do these things and feel what they feel. No one wants to admit that it can happen to them.
We try to know all the answers. We pretend. We fight. We put up a strong front.
I don't care who you are. Mom. Dad. Grandma. Grandpa. Aunt. Uncle. Sibling. Friend. You do it too.
This is the voice that is lost. This is what we are missing. This is the part of our journey through the adventure of life that can help others not feel like an island.
Don't get me wrong here, though. Are things often fantastic? Yes. Do we love our children unconditionally? Yes. Do we accept them and love them as they are for all their quirks and hardships? You betcha. Would we change them? In my case, absolutely not.
But surely the world cannot expect that our children do not misbehave. That they do not have meltdowns (not the same as tantrums!). That they do not have off moments.
That would be as lacking as the assumption that they are not loving, fun, enjoyable, creative, little human beings with a ton of love and happiness to share.
My son loves to be happy. He strives to please. He's very creative. He's even working on the 4th book in his little chapter book series. He is the most loving child I know. He wants to snuggle, play, dote on the cats, and create. He is a great inventor after all. :)
But even we have our off moments. Our not so sunny days. It would be wrong to deny us that admission. It would be wrong to judge us differently or more harshly as a result of it. We aren't any different. We just have different trials.
We adjust. We adapt. We overcome.
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