I haven't written anything in a couple of months. Not because I don't have anything to write about, but because I just haven't had time to sit at the computer. But I've had lots of posts rolling around in my head. Its time to start getting them out.
Late October through early January is really busy for us. It starts with Halloween and Mr. Fixit's birthday. On the same day. Mr. Fixit typically takes a backseat to Halloween. But, since this year was his 50th birthday, we sort of made a big deal out of it. November brings The Quiet One's birthday and Thanksgiving. And many days off from school. December brings The Boy's birthday and Winter break from school. Which means no regular schedule for weeks. I don't think I need to tell you want that means. And this year, in the midst of all this, my sister and I moved our parents into an assisted living facility. (I have a whole, long post about that for another day.) To say I've been a little busy would be an understatement.
Thankfully, school is back in session, holiday and birthday season has ended, my parents are settled, and routine has returned to our household.
Yesterday we enjoyed a beautiful spring like day with sunshine and near 60 degrees. Wanting to take advantage of the beautiful weather, The Boy and I rode bikes home from school. It was a lovey, soul rejuvenating ride... Until an ambulance went screaming by right in front of us. Lights flashing red, sirens blaring; it even hurt my ears. And The Boy didn't even flinch. Did. Not. Flinch.
He calmly looked at me and said "It's an ambulance. He's helping people." He watched it until he could no longer see it and then he started peddling home again.
Years ago I told myself that I would not overlook the small miracles in our unique life. It's these small moments that fuel our life, keep us going through the hard. And this definitely qualifies.
Two years ago, The Boy would have completely melted down if he heard an ambulance blocks away, while inside the house. Between his Sensory Processing Disorder and his Generalized Anxiety Disorder, an ambulance (or any emergency vehicle) was just too much for him. He couldn't cope. I can't tell you how many times the school has called me to come get him because an emergency vehicle has gone by and he can't calm down. He needs to leave school, a puddle of anxiety. And the rest of our day would be so hard. Anxiety all evening. At bed time he would lay in the dark, squeezing my hand, saying "no ambulance, no ambulance" over and over again. It would stay with him for days. It was all just too much. And it broke my heart.
Years. We've worked with him on this for years. Trying to give him coping strategies that would work for him. We tried noise cancelling head phones. He won't wear them, hates them, doesn't tolerate anything on or around his ears. We tried teaching him to put his hands over his ears. Another no go. By the time we heard the siren and reminded him to do it, it was too late. He was already melting down and was beyond being able to process the verbal instruction. And if we tried to do it, he would fight us. His "Fight or Flight" response already being triggered. His hearing is so much better than mine, he hears everything long before I recognize the sounds.
Then, about a year ago, we decided to reframe the trigger. Instead of the siren and flashing lights being an attack, we started explaining why they were happening. The ambulance or police car is hurrying to go help someone. The fire truck is going to put out a fire and help people. These are our community helpers. When you see or hear one, they are helping people. This is a good thing. We want them to be able to get there quickly so they can help.
And slowly, very slowly, it started working. And then yesterday, my boy did not flinch. He didn't meltdown. He didn't panic. He calmly looked at me and said "Its an ambulance. He's helping people."
Something so simple and everyday for most people. For us, it is a small miracle. A huge leap of progress. Something to be celebrated.
This may be a long journey that we are on, but there are a multitude of bright spots along the way.
My Side of Typical
Showing posts with label meltdown. Show all posts
Showing posts with label meltdown. Show all posts
Sunday, January 24, 2016
Thursday, April 24, 2014
The Kindness of a Stranger
To the Lady on "M" Street:
I drove by your street again today. And just like every other time I drive by there, I thought about you. It's been almost 3 years since that day. A day that stays with me.
We were on the way to the hospital for yet another abdominal x-ray when it happened. The Boy got a bloody nose. At all of 5 years old, with numerous special needs and very little verbal skills; bloody noses freak him out. Completely. Freak. Him. Out.
I had to pull over, and chance would have it that I stopped in front of your house. We got out of the car, The Boy screaming bloody murder for all the world to hear. He's running up and down the street. I'm trying to grab him, hold him. He's hitting and kicking trying to get away. He's splitting blood everywhere. I'm covered in it, he's covered in it, its getting all over the sidewalk. I have no idea what it looked like to a passer by, but I'm sure it was a sight to make anyone pause.
I didn't even notice when you came out of your house. I have no idea how long you watched us. I was a little preoccupied. I didn't notice you until you gently touched my shoulder. You quietly asked if there was anything you could do to help. Was there someone you could call for me. Nearly in tears myself and using all my energy to try and calm my child, I could only shake my head. And I thought you left.
But you returned just a few minutes later with a couple of damp towels. You quietly handed them to me and stepped back. The Boy had finally stopped kicking and hitting. He was sitting on my lap, still crying, still spitting blood; but he let me place a damp towel on his face. A while later when the bleeding had stopped, you were back with 2 glasses of cold water. And still, you said nothing, asked nothing. You simply did what you could to help, quietly, unassuming.
I have no idea what you thought. I sometimes wonder. Here is this kid who looks like he's 7 or 8 years old in a complete meltdown panic, fighting the women he's with, blood going everywhere. I'm surprised you didn't call the police. But I'm thankful you didn't.
We spoke very few words. When The Boy was calm enough I put him back in the car. I turned and looked at you embarrassed, exhausted, holding bloody towels. You smiled and said keep them, you may need them on your way home. And you slowly turned with the empty glasses in your hands and returned to your house. I think I mumbled thank you before I turned to get in my car.
Later at home I washed your towels with the intent of returning them to you. But I couldn't get the bloody, grimy stains out even with repeated washings and bleach. So I gave up. I never went back to your house. I never truly thanked you for your kindness. That part sits heavy on my heart. You have no idea how much your kindness meant to me. You never asked any questions, you never passed any judgment, you simply tried to help. And that spoke volumes to me. The world could learn a few lessons from you, me included.
And please know this, every time I drive by your street I whisper thank you.
I drove by your street again today. And just like every other time I drive by there, I thought about you. It's been almost 3 years since that day. A day that stays with me.
We were on the way to the hospital for yet another abdominal x-ray when it happened. The Boy got a bloody nose. At all of 5 years old, with numerous special needs and very little verbal skills; bloody noses freak him out. Completely. Freak. Him. Out.
I had to pull over, and chance would have it that I stopped in front of your house. We got out of the car, The Boy screaming bloody murder for all the world to hear. He's running up and down the street. I'm trying to grab him, hold him. He's hitting and kicking trying to get away. He's splitting blood everywhere. I'm covered in it, he's covered in it, its getting all over the sidewalk. I have no idea what it looked like to a passer by, but I'm sure it was a sight to make anyone pause.
I didn't even notice when you came out of your house. I have no idea how long you watched us. I was a little preoccupied. I didn't notice you until you gently touched my shoulder. You quietly asked if there was anything you could do to help. Was there someone you could call for me. Nearly in tears myself and using all my energy to try and calm my child, I could only shake my head. And I thought you left.
But you returned just a few minutes later with a couple of damp towels. You quietly handed them to me and stepped back. The Boy had finally stopped kicking and hitting. He was sitting on my lap, still crying, still spitting blood; but he let me place a damp towel on his face. A while later when the bleeding had stopped, you were back with 2 glasses of cold water. And still, you said nothing, asked nothing. You simply did what you could to help, quietly, unassuming.
I have no idea what you thought. I sometimes wonder. Here is this kid who looks like he's 7 or 8 years old in a complete meltdown panic, fighting the women he's with, blood going everywhere. I'm surprised you didn't call the police. But I'm thankful you didn't.
We spoke very few words. When The Boy was calm enough I put him back in the car. I turned and looked at you embarrassed, exhausted, holding bloody towels. You smiled and said keep them, you may need them on your way home. And you slowly turned with the empty glasses in your hands and returned to your house. I think I mumbled thank you before I turned to get in my car.
Later at home I washed your towels with the intent of returning them to you. But I couldn't get the bloody, grimy stains out even with repeated washings and bleach. So I gave up. I never went back to your house. I never truly thanked you for your kindness. That part sits heavy on my heart. You have no idea how much your kindness meant to me. You never asked any questions, you never passed any judgment, you simply tried to help. And that spoke volumes to me. The world could learn a few lessons from you, me included.
And please know this, every time I drive by your street I whisper thank you.
Thursday, March 7, 2013
Careful What You Wish For
When Bambam was 2.5 years old and not uttering a single work yet, I had but one single wish. If he could just talk. If he could just tell me what he needed, wanted, liked, hated, was scared of, etc our lives would be so much easier. The endless meltdowns would slow down, possibly end. It was to me the answer to everything.
With hours and hours of therapy and patience, he did eventually start speaking. And has not shut up since. I have never been around a child with such severe verbal diarrhea. That child is never quiet. He talks incessantly, and usually about one topic that he perseverates on day after day after day for weeks. The topic may change every few weeks, but after 3-4 weeks of hearing about the same biplane, or pizza delivery man, or bulldozer I'm about ready to use the pirate bullet on myself. How much is one parent expected to take?
Last weekend Miracle Boy was gone. And Bambam was obsessing over this fact. He is after all Miracle Boy's shadow. Sometimes I feel bad for that teenager as Bambam follows him all around the house. So starting at 6:30 Sunday morning Bambam started with "When brother home?" or "when brother time?" or "brother home 10 minutes?" or "brother home an hour?" or "brother home yet?" or ..... you get the idea. Every 5 minutes there was some version of this question. And he doesn't just ask the question, he has to poke you too, just to make sure he has your attention. Imagine: poke, poke, poke every 5 minutes. And he does not discriminate on where he pokes you, arm, leg, stomach, back, boob. Poke, poke poke, "brother home 10 minutes?" over and over and over again.
By 10:00 am I had locked my self in my bathroom. I know, mother of the year award. But seriously, if he poked me one more time I was going to loose it. Poke, poke, poke. If you don't think that is irritating, you are a saint.
I love that he can talk and tell us what he needs, when noises are too loud, that he likes the garbage truck, that the neighbor's dog is his friend. I love the things he says, he's funny without trying. Having him tell me that he had lunch with TJ and played with Ben at recess is beautiful to me. He's worked so long and hard so he can tell me. But silence, just a few minutes of silence, well they say its golden. I'm not sure, I don't think I've heard it in oh 4 years or so. Perhaps I should borrow his noise cancelling headphones.
With hours and hours of therapy and patience, he did eventually start speaking. And has not shut up since. I have never been around a child with such severe verbal diarrhea. That child is never quiet. He talks incessantly, and usually about one topic that he perseverates on day after day after day for weeks. The topic may change every few weeks, but after 3-4 weeks of hearing about the same biplane, or pizza delivery man, or bulldozer I'm about ready to use the pirate bullet on myself. How much is one parent expected to take?
Last weekend Miracle Boy was gone. And Bambam was obsessing over this fact. He is after all Miracle Boy's shadow. Sometimes I feel bad for that teenager as Bambam follows him all around the house. So starting at 6:30 Sunday morning Bambam started with "When brother home?" or "when brother time?" or "brother home 10 minutes?" or "brother home an hour?" or "brother home yet?" or ..... you get the idea. Every 5 minutes there was some version of this question. And he doesn't just ask the question, he has to poke you too, just to make sure he has your attention. Imagine: poke, poke, poke every 5 minutes. And he does not discriminate on where he pokes you, arm, leg, stomach, back, boob. Poke, poke poke, "brother home 10 minutes?" over and over and over again.
By 10:00 am I had locked my self in my bathroom. I know, mother of the year award. But seriously, if he poked me one more time I was going to loose it. Poke, poke, poke. If you don't think that is irritating, you are a saint.
I love that he can talk and tell us what he needs, when noises are too loud, that he likes the garbage truck, that the neighbor's dog is his friend. I love the things he says, he's funny without trying. Having him tell me that he had lunch with TJ and played with Ben at recess is beautiful to me. He's worked so long and hard so he can tell me. But silence, just a few minutes of silence, well they say its golden. I'm not sure, I don't think I've heard it in oh 4 years or so. Perhaps I should borrow his noise cancelling headphones.
Sunday, February 24, 2013
The Power of Language
The New Guy (Bambam's neurological psychiatrist) is big on language development. As he put it "language is the key that unlocks everything". He's encouraged us to supplement the speech and language therapy that Bambam receives at school with private SLP on a weekly basis. We're getting this set up. But, in the mean time, we've had some evidence of how powerful language can be for a child like Bambam. Two very recent examples come to mind.
Last weekend Bambam was sick. Just a 24 hour thing, but fever, vomiting, stomach ache, you get the idea. In the past when Bambam has been sick and vomiting, he's been a disaster. It always included yelling, screaming, crying, flailing about, spitting, and general meltdown mode. There was no comforting him, he would be a disaster until he fell asleep. But last weekend we had a different sick kid. This one could tell us "I doan feew good". And even warned us with "I frow up, I frow up!". Like any mom, I felt terrible that my child was sick. But, I was also thrilled with this little boy who could TELL ME that he was sick. Being able to verbalize how he was feeling was amazing, a first, a huge step forward in his development. And it seemed to give him a sense of control. He wasn't yelling or crying or screaming and there was no melting down. Just a sick little boy laying on the couch saying "I doan feew good".
Then, later this week when I went to pick up Bambam from school, they were having a fire drill. And wow is that alarm LOUD. I could hear it 2 blocks away inside my car with the radio on. And I cringed. Fire alarms have always been a source of meltdowns for Bambam. In fact, the school has excused him from all fire drills since the first one his kindergarten year that traumatized him. I'm not sure how this one occurred without me getting a call to pick him up early and I was a little upset about that. I figured I was going to have a very long afternoon with a child close to meltdown stage for the rest of the day. But, as I waited for him to return to the building with his aid, what I saw amazed me. Here came this little boy holding Mrs. "E's" hand with no tears, no yelling, no melting down. When he saw me he said "is too loud, it scares me". Um, WOW! The power of language. Just being able to say that it was too loud and scarey gave him the control he needed to be able to function in that situation.
New Guy is right, language is the key to unlocking everything.
Last weekend Bambam was sick. Just a 24 hour thing, but fever, vomiting, stomach ache, you get the idea. In the past when Bambam has been sick and vomiting, he's been a disaster. It always included yelling, screaming, crying, flailing about, spitting, and general meltdown mode. There was no comforting him, he would be a disaster until he fell asleep. But last weekend we had a different sick kid. This one could tell us "I doan feew good". And even warned us with "I frow up, I frow up!". Like any mom, I felt terrible that my child was sick. But, I was also thrilled with this little boy who could TELL ME that he was sick. Being able to verbalize how he was feeling was amazing, a first, a huge step forward in his development. And it seemed to give him a sense of control. He wasn't yelling or crying or screaming and there was no melting down. Just a sick little boy laying on the couch saying "I doan feew good".
Then, later this week when I went to pick up Bambam from school, they were having a fire drill. And wow is that alarm LOUD. I could hear it 2 blocks away inside my car with the radio on. And I cringed. Fire alarms have always been a source of meltdowns for Bambam. In fact, the school has excused him from all fire drills since the first one his kindergarten year that traumatized him. I'm not sure how this one occurred without me getting a call to pick him up early and I was a little upset about that. I figured I was going to have a very long afternoon with a child close to meltdown stage for the rest of the day. But, as I waited for him to return to the building with his aid, what I saw amazed me. Here came this little boy holding Mrs. "E's" hand with no tears, no yelling, no melting down. When he saw me he said "is too loud, it scares me". Um, WOW! The power of language. Just being able to say that it was too loud and scarey gave him the control he needed to be able to function in that situation.
New Guy is right, language is the key to unlocking everything.
Thursday, January 3, 2013
Humanity
I refuse to give up my belief that people want to do the right thing; that at the heart of it they basically want to do and be the best that they can. I'm not naive enough to believe this is true of every single person, I know there are exceptions. But as a whole, I believe this to be true. I believe in humanity
I see examples of it every day. I see it in the scruffy man who paid the difference for the little girl who didn't have enough money. I see it in the cashier at the big box store who lifted the big turkey out of the elderly ladies cart to scan it and then put it back in for her and then called another employee to help her to her car. At a big box store that doesn't provide any help, at all, for anything. I see it when 3 cars stop for the stranded lady on the side of the road to see if they can help her. I see it in the gentleman who opened the door for me today. I see it in the smiles of the people I pass.
And I see it many times a day in Bambam's activities. I see it in Bambam's swim teacher who goes above and beyond to connect with him and keep him engaged. Who patiently replies "goodbye" 18 times as Bambam says this every 10 seconds as we are getting ready to leave. I see it in Bambam's teachers and classmates who are beyond accepting and caring. I see it at the pool where they do not make Bambam where the paper wrist band as it dives him nuts. I see it at the Fun House airport where they allow Bambam out on the tarmac to see the planes. I see it in his soccer coach, who with no real experience with autism made appropriate accommodations for him. Who was supportive and understanding and who celebrated his little victories as much as we did.
But even more importantly, I see it in strangers who we pass briefly. People who don't know him and don't really understand his quirks. Like the lady at the groccery store in front of us who asks if we want to go first so we don't have to wait so long. Or the pharmacy clerk who engages him in conversation and seems completely comfortable with the fact that he is stuck on the same thought. Or the man at the stables who graciously took us back to see the horses in the barns, even though the barns were closed.
Don't get me wrong. Not all of our outings are all roses and sunshine. One particular example comes to mind. Last year I took all three boys up to the ski lodge. The older boys were snowboarding and I thought Bambam would enjoy a day playing in the snow. He loves the snow. Boy was I wrong. It was a new place, his brothers went off on the mountain without him, it was noisy and chaotic in the lodge and Bambam was beside himself. By the time I got him into the bathroom to put his snow clothes on he was in full blown meltdown mode. He was screaming and flailing all about as I was trying to change him when the janitor approached us and said to him "You are really too old to be acting this way."
Being on my last nerve, I lost it. It is not my proudest moment. My response to her was "Even though he looks 8, he's only 5. And he's autistic. So, when you've raised a special needs child, then you can comment on how I'm raising mine." At which point I started crying right along with Bambam. It was a low point for me. We walked off around the corner to try and put his boots on.
But you know what? Before we got calmed down and both boots on, she came back. She gently placed her hand on my shoulder and said, "I'm so sorry. It was really none of my business and I shouldn't have said anything. Is there anything I can do to help?" And I started crying all over again.
In the midst of all the terrible news stories we've been hearing, I still refuse to give up my belief that people want to do the right thing; that at the heart of it they basically want to do and be the best that they can. I choose to believe in humanity.
I see examples of it every day. I see it in the scruffy man who paid the difference for the little girl who didn't have enough money. I see it in the cashier at the big box store who lifted the big turkey out of the elderly ladies cart to scan it and then put it back in for her and then called another employee to help her to her car. At a big box store that doesn't provide any help, at all, for anything. I see it when 3 cars stop for the stranded lady on the side of the road to see if they can help her. I see it in the gentleman who opened the door for me today. I see it in the smiles of the people I pass.
And I see it many times a day in Bambam's activities. I see it in Bambam's swim teacher who goes above and beyond to connect with him and keep him engaged. Who patiently replies "goodbye" 18 times as Bambam says this every 10 seconds as we are getting ready to leave. I see it in Bambam's teachers and classmates who are beyond accepting and caring. I see it at the pool where they do not make Bambam where the paper wrist band as it dives him nuts. I see it at the Fun House airport where they allow Bambam out on the tarmac to see the planes. I see it in his soccer coach, who with no real experience with autism made appropriate accommodations for him. Who was supportive and understanding and who celebrated his little victories as much as we did.
But even more importantly, I see it in strangers who we pass briefly. People who don't know him and don't really understand his quirks. Like the lady at the groccery store in front of us who asks if we want to go first so we don't have to wait so long. Or the pharmacy clerk who engages him in conversation and seems completely comfortable with the fact that he is stuck on the same thought. Or the man at the stables who graciously took us back to see the horses in the barns, even though the barns were closed.
Don't get me wrong. Not all of our outings are all roses and sunshine. One particular example comes to mind. Last year I took all three boys up to the ski lodge. The older boys were snowboarding and I thought Bambam would enjoy a day playing in the snow. He loves the snow. Boy was I wrong. It was a new place, his brothers went off on the mountain without him, it was noisy and chaotic in the lodge and Bambam was beside himself. By the time I got him into the bathroom to put his snow clothes on he was in full blown meltdown mode. He was screaming and flailing all about as I was trying to change him when the janitor approached us and said to him "You are really too old to be acting this way."
Being on my last nerve, I lost it. It is not my proudest moment. My response to her was "Even though he looks 8, he's only 5. And he's autistic. So, when you've raised a special needs child, then you can comment on how I'm raising mine." At which point I started crying right along with Bambam. It was a low point for me. We walked off around the corner to try and put his boots on.
But you know what? Before we got calmed down and both boots on, she came back. She gently placed her hand on my shoulder and said, "I'm so sorry. It was really none of my business and I shouldn't have said anything. Is there anything I can do to help?" And I started crying all over again.
In the midst of all the terrible news stories we've been hearing, I still refuse to give up my belief that people want to do the right thing; that at the heart of it they basically want to do and be the best that they can. I choose to believe in humanity.
Sunday, December 16, 2012
Birthday Parties
Bambam was invited to a classmate's birthday party. This is HUGE. This is the first birthday party invitation he's received. Granted, the entire class was invited. But they included Bambam. I was both touched and intimidated at the same time.
I do not remember what a typical 7 year old birthday party is like. Bambam has never had a birthday party with his peers. His parties include our family plus both grandparents. And even that can sometimes overwhelm him. I can't imagine him at a party with 20+ kids.
On the plus side, the party was at the indoor bounce place. Bambam loves the bounce place. Imagine, a boy who's stim is to jump; the indoor bounce plance is like heaven to him. Jumping grounds him, calms him, helps him to block out overwhelming stimuli. He begs to go there ALL.THE.TIME. Plus, that probably means that there will not be organized activities, but rather free play time. This might just work.
The invitation asked for an RSVP. I would have called the parents anyway. In a situation like this, I want to make sure they know who Bambam is. That they understand his... uniqueness. So I called and clumsily ask the dad if he knew who Bambam was. And I will forever remember his response. "Of course I do. He's the cute little blond boy with the aide." And that just about made my heart melt. What a sweet way to identy my boy. Not "the special needs boy" which honestly doesn't offend me, he is a special needs child. I just really thought that he identified Bambam in a very sweet, respectful way. And I knew we had to attend the party. Especially after he went on to say that his son has specifically asked to invite Bambam.
So, Bambam and I went shopping to find a birthday present. I had asked the dad what his child liked so we were armed with good info. And, as luck would have it, this little boy loves sports. Just like Bambam, any sport with a ball is awesome. Bambam picked a football with the team logo from our local university. Then he helped me wrap it in a gift bag with tissue. It may not have been the prettiest present, but Bambam was so proud.
He was so excited the morning of the party. He almost drove us nuts. It was all he talked about. All morning long we heard "go to bounce house now?", "go to party now?", "see my friends now?". Over and over until we finally left.
When we arrived it was a little chaotic and Bambam hung back for a little while. But with some promting, he greeted the boy with a "Happy Birthday" and gave him the gift. Then he ran off to go bouncing. Throughout the 2 hour party, the other kids would invite Bambam to join in what ever game they were playing, and sometimes he did. But when the noise and chaos got to be too much, he would go find a quieter corner to bounce by himself. I was so proud of him that he knew what he needed and was able to get it without a single melt down. This is true progress. He even invited another little boy from his class (who is shy and reserved) to come play with him in the quieter corner.
When it was time for cake and presents, we were all ushered into a room that was already set up. I knew this would be the hardest part for Bambam. The room was a little hollow and echoed. With 22 ampted up kids and half a dozen parents, it was loud and chaotic. A recipe for sensory overload. Bambam took a seat next to the shy little boy he had previously asked to play. He ate about half his cake before he turned to me and said "I need to go home now." Not wanting him to go home yet, I suggested he go find a quiet corner and jump for a while. He ran off with a smile.
When it was time to open presents, I called him back to the room and he watched from the doorway as the birthday boy opened all his presents. After which, all the kids ran out of the room to go bounce and play. And you know what? That football, the one Bambam had brought for the birthday boy, it was the favorite present. The birthday boy carried it all around the bounce place. And all the other kids wanted to play with it. And Bambam was grinning from ear to ear as he ran after them.
That was about the best birthday party ever.
I will forever be greatfull to the amazing kids in Bambam's class. They are caring, understanding, tolerant, accepting, etc. The list goes on and on. They amaze me on a daily basis. They are being lead and taught by wonderful adults. The parents of the birthday boy were so gracious. They both went out of their way to make sure he was included, comfortable, and having fun. The mom even gave Bambam the balloons at the end of the party. This was a success on all levels.
I do not remember what a typical 7 year old birthday party is like. Bambam has never had a birthday party with his peers. His parties include our family plus both grandparents. And even that can sometimes overwhelm him. I can't imagine him at a party with 20+ kids.
On the plus side, the party was at the indoor bounce place. Bambam loves the bounce place. Imagine, a boy who's stim is to jump; the indoor bounce plance is like heaven to him. Jumping grounds him, calms him, helps him to block out overwhelming stimuli. He begs to go there ALL.THE.TIME. Plus, that probably means that there will not be organized activities, but rather free play time. This might just work.
The invitation asked for an RSVP. I would have called the parents anyway. In a situation like this, I want to make sure they know who Bambam is. That they understand his... uniqueness. So I called and clumsily ask the dad if he knew who Bambam was. And I will forever remember his response. "Of course I do. He's the cute little blond boy with the aide." And that just about made my heart melt. What a sweet way to identy my boy. Not "the special needs boy" which honestly doesn't offend me, he is a special needs child. I just really thought that he identified Bambam in a very sweet, respectful way. And I knew we had to attend the party. Especially after he went on to say that his son has specifically asked to invite Bambam.
So, Bambam and I went shopping to find a birthday present. I had asked the dad what his child liked so we were armed with good info. And, as luck would have it, this little boy loves sports. Just like Bambam, any sport with a ball is awesome. Bambam picked a football with the team logo from our local university. Then he helped me wrap it in a gift bag with tissue. It may not have been the prettiest present, but Bambam was so proud.
He was so excited the morning of the party. He almost drove us nuts. It was all he talked about. All morning long we heard "go to bounce house now?", "go to party now?", "see my friends now?". Over and over until we finally left.
When we arrived it was a little chaotic and Bambam hung back for a little while. But with some promting, he greeted the boy with a "Happy Birthday" and gave him the gift. Then he ran off to go bouncing. Throughout the 2 hour party, the other kids would invite Bambam to join in what ever game they were playing, and sometimes he did. But when the noise and chaos got to be too much, he would go find a quieter corner to bounce by himself. I was so proud of him that he knew what he needed and was able to get it without a single melt down. This is true progress. He even invited another little boy from his class (who is shy and reserved) to come play with him in the quieter corner.
When it was time for cake and presents, we were all ushered into a room that was already set up. I knew this would be the hardest part for Bambam. The room was a little hollow and echoed. With 22 ampted up kids and half a dozen parents, it was loud and chaotic. A recipe for sensory overload. Bambam took a seat next to the shy little boy he had previously asked to play. He ate about half his cake before he turned to me and said "I need to go home now." Not wanting him to go home yet, I suggested he go find a quiet corner and jump for a while. He ran off with a smile.
When it was time to open presents, I called him back to the room and he watched from the doorway as the birthday boy opened all his presents. After which, all the kids ran out of the room to go bounce and play. And you know what? That football, the one Bambam had brought for the birthday boy, it was the favorite present. The birthday boy carried it all around the bounce place. And all the other kids wanted to play with it. And Bambam was grinning from ear to ear as he ran after them.
That was about the best birthday party ever.
I will forever be greatfull to the amazing kids in Bambam's class. They are caring, understanding, tolerant, accepting, etc. The list goes on and on. They amaze me on a daily basis. They are being lead and taught by wonderful adults. The parents of the birthday boy were so gracious. They both went out of their way to make sure he was included, comfortable, and having fun. The mom even gave Bambam the balloons at the end of the party. This was a success on all levels.
Thursday, December 13, 2012
Seven!
My boy is turning 7. My sweet,cherubic, happy baby boy is now a big kid of 7. I'm not sure how this happened in the blink of an eye, but it did. You'd think I'd be used to it, he's not the first. But it still makes me pause.
First grade. He's in first grade now. Not quite at school all day (he comes home an hour early, that seems to be all his sensory system can take) but still much longer than kindergarten. And I'm so proud of him.
He still spends much of his day in the LRC with a one to one aid. But he is now ASKING to go to his class. He will sit with the other kids for 20 minutes as they read to him. He participates in art and is so proud of his masterpieces. He works with his teacher to check in all the kids and their homework in the morning. He knows and greets all his classmates by name. He goes to library with them and uses a quiet voice (wish I knew how they accomplished this, he still only uses very loud at home). He wants to be with them, interacting with them. And I'm so proud.
He is now eating lunch in the cafeteria with his class. And actually eating his lunch. Without an aid by his side. And going to recess with all the other kids. And not getting overwhelmed or melting down. He's playing with his peers. And I'm so proud.
He is taking swimming lessons. I sometimes wondered if he would take lessons of any kind. But now he's in swimming. And he loves it. He looks forward to seeing Teacher Brad. And Teacher Brad is awesome. Honestly, about 10 minutes is spent on actual swim lesson stuff. The other 20 are spent on more social interacting. But my kid is kicking, and using "big arms", and blowing bubbles, and going underwater. There is no actual swimming yet, but I know there will be in his own time. And I am so pround.
He has grown and gained skills in so many ways. I simply can't write about them all. My baby is now 7 and I couldn't be prouder of him. Happy birthday big boy!
First grade. He's in first grade now. Not quite at school all day (he comes home an hour early, that seems to be all his sensory system can take) but still much longer than kindergarten. And I'm so proud of him.
He still spends much of his day in the LRC with a one to one aid. But he is now ASKING to go to his class. He will sit with the other kids for 20 minutes as they read to him. He participates in art and is so proud of his masterpieces. He works with his teacher to check in all the kids and their homework in the morning. He knows and greets all his classmates by name. He goes to library with them and uses a quiet voice (wish I knew how they accomplished this, he still only uses very loud at home). He wants to be with them, interacting with them. And I'm so proud.
He is now eating lunch in the cafeteria with his class. And actually eating his lunch. Without an aid by his side. And going to recess with all the other kids. And not getting overwhelmed or melting down. He's playing with his peers. And I'm so proud.
He is taking swimming lessons. I sometimes wondered if he would take lessons of any kind. But now he's in swimming. And he loves it. He looks forward to seeing Teacher Brad. And Teacher Brad is awesome. Honestly, about 10 minutes is spent on actual swim lesson stuff. The other 20 are spent on more social interacting. But my kid is kicking, and using "big arms", and blowing bubbles, and going underwater. There is no actual swimming yet, but I know there will be in his own time. And I am so pround.
He has grown and gained skills in so many ways. I simply can't write about them all. My baby is now 7 and I couldn't be prouder of him. Happy birthday big boy!
Thursday, November 1, 2012
Halloween
A text to my friend on Halloween 2009:
"Wow. Trick-or-treating has never been such an utter failure. Didn't want to put on his costume. Refused to wear the hat. Wouldn't knock on any doors, didn't say anything other than "home, home", threw the few pieces of candy he did get. And when we turned a corner and saw a fire pit, it was all over. Full blown meltdown, crying, screaming, trying to claw his way into my shirt, total chaos. I just want him to have fun."
That was 3 years ago. Before a diagnosis of Autism. Before we learned about Sensory Processing Disorder. And all the other idiosyncrasies that go along with the label of Autism. Knowledge is so powerful.
After 3 years of intensive (on going) therapies we have a different child.
Halloween 2012:
Bambam: "Hawoween coming"
Me: "Yes, do you want to dress up and go trick-or-treating?"
Bambam: "Yesssss"
Me: "What do you want to dress up as?"
Bambam: "Buzzzz...or Spyermn"
So I found a Spiderman costume and paid $30.00 for it. To which Mr. Fixit said, "You paid $30 for a costum that he will only wear 60% of (he won't wear anything on his head, so much for the mask) as he goes to the 3 houses of neighbors he knows and then insists on coming home?" Yup, my kid TOLD ME WHAT HE WANTED TO BE FOR HALLOWEEN. You bet I spent $30 on it, even if he doesn't end up trick-or-treating at all! He brought up Halloween unpromted, and then told me what he wanted to be. That alone was enough for me. I would have spent $100.
Yet, I still had no expectations. After several years of unsuccessful attempts at trick-or-treating, I had finally learned to just let it go. After dinner I casually asked Bambam if he wanted to put on his costume and go trick-or-treating. To which he answered a resounding "No!" OK, I told him to let me know if he decided he wanted to go and went about cleaning up the kitchen. About 15 minutes later he brought his costume to me and asked to go trick-or-treating.
I helped him get into the body suit and set the mask aside. But he pointed at it and said "I need dat". Really??? Yup, he put it on! A full over-the-head mask with 2 eye holes and tiny nose holes. This kid who has refused to even wear noise cancelling headphones has a full head mask on! And out the front door he went, running to the neighbor's house.
In the end he not only went to the 3 houses of the people he knows and talks to regularly, but up and down the next 2 streets. We had to run to keep up with him. He sometimes forgot to say "trick-or-treat" and just said "please" instead (scripting is not his thing). But he never forgot to say thank you. He kept the mask on for about 4 houses, then it ended up in the candy bag. But I couldn't have been more proud of him. My kid enjoyed Halloween. HE HAD FUN.
Best $30 I've spent all year.
"Wow. Trick-or-treating has never been such an utter failure. Didn't want to put on his costume. Refused to wear the hat. Wouldn't knock on any doors, didn't say anything other than "home, home", threw the few pieces of candy he did get. And when we turned a corner and saw a fire pit, it was all over. Full blown meltdown, crying, screaming, trying to claw his way into my shirt, total chaos. I just want him to have fun."
That was 3 years ago. Before a diagnosis of Autism. Before we learned about Sensory Processing Disorder. And all the other idiosyncrasies that go along with the label of Autism. Knowledge is so powerful.
After 3 years of intensive (on going) therapies we have a different child.
Halloween 2012:
Bambam: "Hawoween coming"
Me: "Yes, do you want to dress up and go trick-or-treating?"
Bambam: "Yesssss"
Me: "What do you want to dress up as?"
Bambam: "Buzzzz...or Spyermn"
So I found a Spiderman costume and paid $30.00 for it. To which Mr. Fixit said, "You paid $30 for a costum that he will only wear 60% of (he won't wear anything on his head, so much for the mask) as he goes to the 3 houses of neighbors he knows and then insists on coming home?" Yup, my kid TOLD ME WHAT HE WANTED TO BE FOR HALLOWEEN. You bet I spent $30 on it, even if he doesn't end up trick-or-treating at all! He brought up Halloween unpromted, and then told me what he wanted to be. That alone was enough for me. I would have spent $100.
Yet, I still had no expectations. After several years of unsuccessful attempts at trick-or-treating, I had finally learned to just let it go. After dinner I casually asked Bambam if he wanted to put on his costume and go trick-or-treating. To which he answered a resounding "No!" OK, I told him to let me know if he decided he wanted to go and went about cleaning up the kitchen. About 15 minutes later he brought his costume to me and asked to go trick-or-treating.
I helped him get into the body suit and set the mask aside. But he pointed at it and said "I need dat". Really??? Yup, he put it on! A full over-the-head mask with 2 eye holes and tiny nose holes. This kid who has refused to even wear noise cancelling headphones has a full head mask on! And out the front door he went, running to the neighbor's house.
In the end he not only went to the 3 houses of the people he knows and talks to regularly, but up and down the next 2 streets. We had to run to keep up with him. He sometimes forgot to say "trick-or-treat" and just said "please" instead (scripting is not his thing). But he never forgot to say thank you. He kept the mask on for about 4 houses, then it ended up in the candy bag. But I couldn't have been more proud of him. My kid enjoyed Halloween. HE HAD FUN.
Best $30 I've spent all year.
Tuesday, October 16, 2012
The Not So Fun House
We are fortunate enough to have a small vacation house about 3 hours from home. Every time we go there, I thank my lucky stars that we had this house before Bambam was born. He has been going there since he was 10 days old. To him it is just an extension of home, a place he is comfortable and free to be just him. And all his favorite things are just a bike ride away, the airport, the horse stables, the pool. Without this house, we would probably not have had a vacation in the last 6.5 years. And sometimes we just need to get away.
Last weekend we went to our beloved "fun house" as Bambam calls it. We hadn't been in over a month and were looking forward to a relaxing weekend. But it was not to be. The drive over, which normally takes a little less than 3 hours, ballooned to over 4.5 due to an accident that blocked the highway in both directions. Perhaps this should have been a sign to turn around and go home as we sat for over an hour without moving. But Bambam was a rockstar. He played with his airplanes and looked at his books and really did a great job of going with the flow.
Since we arrived so late, we barely had time to eat dinner, read a couple of books, and head off to bed. The first night's sleep is always a little bit shakey with the change in venue. But it usually only takes one night and then he's back on track. Not this time.
When we got up Saturday morning it quickly became obvious that hunting season had started. Gun shots went off frequently all day long. And Bambam fell apart a little bit more each time he heard one. His whole body would get stiff. If he was close to me he would grab hold and squeeze with all his might. There was crying and teeth grinding and basically an all out "fight or flight" alert all weekend.
It was painful to see my sweet boy like this. It felt like we had regressed 2 years. His anxiety level hadn't been this aroused in a very long time. His words were unclear, and when we could understand them they made little sense fleeting from one thing to another. Not even his favorite things could calm him. He was quite simply, a mess.
I did manage to get him to the pool Saturday afternoon where he found a quiet, empty corner and proceeded to jump in, get out, jump in, get out, jump in...over and over again, almost obsessively, seeking some comfort. And as I watched him, I cried. Sitting by the edge of a public pool, the tears streamed down my face as I watched my boy uncomfortable in his own skin, unable to help him, unable to provide him the comfort he was so desperately seeking. Sometimes I hate this.
And then finally, finally later in the weekend he found his words. "Guns are too loud, they scare me." And with that one sentence, a way to express what he was feeling, a way to gain some semblance of control, he began to come back.
Last weekend we went to our beloved "fun house" as Bambam calls it. We hadn't been in over a month and were looking forward to a relaxing weekend. But it was not to be. The drive over, which normally takes a little less than 3 hours, ballooned to over 4.5 due to an accident that blocked the highway in both directions. Perhaps this should have been a sign to turn around and go home as we sat for over an hour without moving. But Bambam was a rockstar. He played with his airplanes and looked at his books and really did a great job of going with the flow.
Since we arrived so late, we barely had time to eat dinner, read a couple of books, and head off to bed. The first night's sleep is always a little bit shakey with the change in venue. But it usually only takes one night and then he's back on track. Not this time.
When we got up Saturday morning it quickly became obvious that hunting season had started. Gun shots went off frequently all day long. And Bambam fell apart a little bit more each time he heard one. His whole body would get stiff. If he was close to me he would grab hold and squeeze with all his might. There was crying and teeth grinding and basically an all out "fight or flight" alert all weekend.
It was painful to see my sweet boy like this. It felt like we had regressed 2 years. His anxiety level hadn't been this aroused in a very long time. His words were unclear, and when we could understand them they made little sense fleeting from one thing to another. Not even his favorite things could calm him. He was quite simply, a mess.
I did manage to get him to the pool Saturday afternoon where he found a quiet, empty corner and proceeded to jump in, get out, jump in, get out, jump in...over and over again, almost obsessively, seeking some comfort. And as I watched him, I cried. Sitting by the edge of a public pool, the tears streamed down my face as I watched my boy uncomfortable in his own skin, unable to help him, unable to provide him the comfort he was so desperately seeking. Sometimes I hate this.
And then finally, finally later in the weekend he found his words. "Guns are too loud, they scare me." And with that one sentence, a way to express what he was feeling, a way to gain some semblance of control, he began to come back.
Thursday, September 13, 2012
The Terrible, Horrible, No Good, Very Bad Day
I understand that there are bad days. How would we recognize the good days if there were no bad ones? The bad ones serve a purpose, one being to help us recognize and savor the good ones. Even during the bad ones, I've always been a "glass half full" sort of girl. I believe in the motto "this too shall pass" and generally don't stay down for very long. At least in my prior life.
Enter Autism. A bad autism day is like a typical bad day on steroids. It can test my "glass half full" theory of life. And if there are several in a row, look out. Life with an autistic child is like living life through an intensifying magnifying glass. The bad days can be really bad. The meltdowns, the hypersensitivity, the inability to focus, listen, relate, sit for more than 1 minute. The constant jumping and bouncing, throwing, hitting, yelling, stimming, obsessing. Some days I wonder where this will all lead.
But just as the bad days can be really bad, the good days can be so amazing that I stand back in awe. The break throughs are hard fought and won and are such amazingly sweet victories. Absolutely.Nothing.Compares. Watching him successfully accomplish a new skill and then look at me (and I mean really look at me, in the eyes) and say "I did it!". There is just no sweeter moment for a mom. Little victories are just as sweet: a successful trip to the dentist where he actually opens his mouth, a completely clean and dry 24 hours, an appropriate social interaction with a child at the park, a successful day at school.
And sometimes you have to look for the silver lining in the dark cloud of a bad day. Yesterday was one of the bad ones. Really bad ones. A "call from the school" bad. After dropping Bambam back at school after lunch (yes, he comes home for lunch every day to decompress) I headed back to work. Within 20 minutes the school had called me. He was out of control. Hitting, kicking, throwing things. Unable to calm down. A full blown meltdown. After apologizing to my boss, I rushed to the school.
Not wanted to start the precedent of "if I act out, I get to go home", I instead stayed at the school all afternoon helping his team come up with ways to avoid this type of total meltdown, and what to do if it did happen. Step one was getting him to calm down. School is not the best environment to accomplish this, but we did our best. And after several 5 minute stints in the quiet spot, he eventurally got himself back in control. But as for working and learning, that part was done for the day. He was exhausted, eyes red and swollen from crying, and hungry. So, he had a snack, colored, told his aide about riding "Bert", looked at books until the school bell rang and I finally took him home.
However, once we got home, he did not get to use his favorite of all things, his iPad. We are trying to teach him the concept of rewards and consequences. We've been talking since school started about how he needs to be nice, stay in control, and work hard at school in order to get iPad when he gets home. This was the first day he didn't get it. And he was very dismayed. I wasn't sure if he was getting it, if he was making the connection. He just kept asking for his iPad. But, when Mr. Fixit came home I got my answer. Bambam almost attacked him with his monologue that went something like this: "Hi daddy I not nice school hitting kicking I no get iPad."
And that is my silver lining in this dark cloud of a day. He is beginning to get it! In the midst of a terrible, horrible, no good, very bad day, he is still learning and growing. And that quickly my tears of frustration turn to tears of joy.
Raising any child has its challenges with highs and lows. Raising an autistic child seems to me to have higher highs and lower lows. The roller coaster is that much bigger with sweeping hills and dropping valleys. It is exciting, scary, exhilarating, and most of all unknown. And yet isn't it the biggest roller coaster that always has the longest line? I've always said that parenting is not for the faint of heart. Parenting an autistic child? Well that's a whole new ride. Life is about the journey, hold on and try to enjoy that ride.
Enter Autism. A bad autism day is like a typical bad day on steroids. It can test my "glass half full" theory of life. And if there are several in a row, look out. Life with an autistic child is like living life through an intensifying magnifying glass. The bad days can be really bad. The meltdowns, the hypersensitivity, the inability to focus, listen, relate, sit for more than 1 minute. The constant jumping and bouncing, throwing, hitting, yelling, stimming, obsessing. Some days I wonder where this will all lead.
But just as the bad days can be really bad, the good days can be so amazing that I stand back in awe. The break throughs are hard fought and won and are such amazingly sweet victories. Absolutely.Nothing.Compares. Watching him successfully accomplish a new skill and then look at me (and I mean really look at me, in the eyes) and say "I did it!". There is just no sweeter moment for a mom. Little victories are just as sweet: a successful trip to the dentist where he actually opens his mouth, a completely clean and dry 24 hours, an appropriate social interaction with a child at the park, a successful day at school.
And sometimes you have to look for the silver lining in the dark cloud of a bad day. Yesterday was one of the bad ones. Really bad ones. A "call from the school" bad. After dropping Bambam back at school after lunch (yes, he comes home for lunch every day to decompress) I headed back to work. Within 20 minutes the school had called me. He was out of control. Hitting, kicking, throwing things. Unable to calm down. A full blown meltdown. After apologizing to my boss, I rushed to the school.
Not wanted to start the precedent of "if I act out, I get to go home", I instead stayed at the school all afternoon helping his team come up with ways to avoid this type of total meltdown, and what to do if it did happen. Step one was getting him to calm down. School is not the best environment to accomplish this, but we did our best. And after several 5 minute stints in the quiet spot, he eventurally got himself back in control. But as for working and learning, that part was done for the day. He was exhausted, eyes red and swollen from crying, and hungry. So, he had a snack, colored, told his aide about riding "Bert", looked at books until the school bell rang and I finally took him home.
However, once we got home, he did not get to use his favorite of all things, his iPad. We are trying to teach him the concept of rewards and consequences. We've been talking since school started about how he needs to be nice, stay in control, and work hard at school in order to get iPad when he gets home. This was the first day he didn't get it. And he was very dismayed. I wasn't sure if he was getting it, if he was making the connection. He just kept asking for his iPad. But, when Mr. Fixit came home I got my answer. Bambam almost attacked him with his monologue that went something like this: "Hi daddy I not nice school hitting kicking I no get iPad."
And that is my silver lining in this dark cloud of a day. He is beginning to get it! In the midst of a terrible, horrible, no good, very bad day, he is still learning and growing. And that quickly my tears of frustration turn to tears of joy.
Raising any child has its challenges with highs and lows. Raising an autistic child seems to me to have higher highs and lower lows. The roller coaster is that much bigger with sweeping hills and dropping valleys. It is exciting, scary, exhilarating, and most of all unknown. And yet isn't it the biggest roller coaster that always has the longest line? I've always said that parenting is not for the faint of heart. Parenting an autistic child? Well that's a whole new ride. Life is about the journey, hold on and try to enjoy that ride.
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