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 spd. Show all posts
Showing posts with label spd. Show all posts
Sunday, January 24, 2016
Wednesday, October 21, 2015
Monday, January 21, 2013
I OK
As I was getting ready this morning, Bambam came into my room and said, "I OK". This is a clear sign that something has happened. So I start to question him.
Me: What happened?
Bambam: It slippy
Me: Did you fall down?
Bambam: Yessss
Me: Did you get hurt?
Bambam: Yesssss
Me: Where did you get hurt?
Bambam: On da ground.
(I should be used to this literal kid by now. New question.)
Me: Where does your body hurt?
Bambam: My foot. Kiss it.
So I did. And that was the end of it for Bambam. But not for me.
Like many kids with an ASD, Bambam has sensory processing issues. He appears to be hyposensitive to pain and temperature. I've seen him hit his head on the corner of a cabinet, putting a small hole in his head with blood running down his face and he not even cry. It is not uncommon for him to have scapes and bruises and us have no idea how he got them. Once, after noticing that he was limping we looked at his foot to see his ankle swollen to double its normal size. Thankfully it was not broken. But this all freaks me out just a little.
Clearly his body reacts to pain, he was limping and that's why we looked at his foot. But he doesn't express anything, or at least very little, about it. He rarely says "ow". He knows he got hurt, he came and told me "I OK". But he doesn't cry and he never complains about being in pain. Ever. Not even when he has 104 degree fever or is vomiting for the 4th time in an hour. Is this just because he doesn't know how to express the pain? Or does it really not register as pain? I don't know. Nor do I know if it matters. The fact is that I remain in fear that some day he will have a broken bone and we won't discover it for a week.
Me: What happened?
Bambam: It slippy
Me: Did you fall down?
Bambam: Yessss
Me: Did you get hurt?
Bambam: Yesssss
Me: Where did you get hurt?
Bambam: On da ground.
(I should be used to this literal kid by now. New question.)
Me: Where does your body hurt?
Bambam: My foot. Kiss it.
So I did. And that was the end of it for Bambam. But not for me.
Like many kids with an ASD, Bambam has sensory processing issues. He appears to be hyposensitive to pain and temperature. I've seen him hit his head on the corner of a cabinet, putting a small hole in his head with blood running down his face and he not even cry. It is not uncommon for him to have scapes and bruises and us have no idea how he got them. Once, after noticing that he was limping we looked at his foot to see his ankle swollen to double its normal size. Thankfully it was not broken. But this all freaks me out just a little.
Clearly his body reacts to pain, he was limping and that's why we looked at his foot. But he doesn't express anything, or at least very little, about it. He rarely says "ow". He knows he got hurt, he came and told me "I OK". But he doesn't cry and he never complains about being in pain. Ever. Not even when he has 104 degree fever or is vomiting for the 4th time in an hour. Is this just because he doesn't know how to express the pain? Or does it really not register as pain? I don't know. Nor do I know if it matters. The fact is that I remain in fear that some day he will have a broken bone and we won't discover it for a week.
Monday, January 7, 2013
Brother
Bambam adores his brothers. Both of them. But he has a special bond with Miracle Boy. I'm sure this is because Miracle Boy has always lived with Bambam. He's always been there, a constant. He loves The Quiet One just as much. But in times of stress, he wants Miracle Boy.
Other than Mr. Fixit or me, Miracle Boy is the only one that can put Bambam to bed. When he needs help going potty or needs changed he turns to Miracle Boy. (Actually me if I'm home; Miracle Boy is a close 2nd even before Mr. Fixit.)
He follows Miracle Boy around the house, wants to hang out with him in the basement, sit next to him at dinner and in the car, mimics him. And he calls him "Brother". It is the sweetest thing. He occasionally refers to him by name; but most of the time he simply calls him "Brother". He loves it when Miracle Boy babysits him: "Brother stay with me?" with a huge grin on his face.
And for the most part, Miracle Boy is up to the challenge. (He is after all a teenager, so sometimes he squawks about it) On school holidays, he frequently acts as Bambam's care provider so I can work. He stays with him so Mr. Fixit and I can have the occasional date night. He is an integral part of what makes our household work.
So I should not have been surprised this past weekend. We were at the Fun House and went sledding for the first time this season. As expected, Bambam was hesitant, something outside the norm. Nothing Mr. Fixit said could convince Bambam to go down the hill with him. So Bambam watched as everyone else went on a run. And he still refused when Mr. Fixit tried to get him to go along the next time. That is until Miracle Boy asked if he wanted to come sledding with him. With that, he took off in a run with a huge grin and went sledding with "Brother".
Other than Mr. Fixit or me, Miracle Boy is the only one that can put Bambam to bed. When he needs help going potty or needs changed he turns to Miracle Boy. (Actually me if I'm home; Miracle Boy is a close 2nd even before Mr. Fixit.)
He follows Miracle Boy around the house, wants to hang out with him in the basement, sit next to him at dinner and in the car, mimics him. And he calls him "Brother". It is the sweetest thing. He occasionally refers to him by name; but most of the time he simply calls him "Brother". He loves it when Miracle Boy babysits him: "Brother stay with me?" with a huge grin on his face.
And for the most part, Miracle Boy is up to the challenge. (He is after all a teenager, so sometimes he squawks about it) On school holidays, he frequently acts as Bambam's care provider so I can work. He stays with him so Mr. Fixit and I can have the occasional date night. He is an integral part of what makes our household work.
So I should not have been surprised this past weekend. We were at the Fun House and went sledding for the first time this season. As expected, Bambam was hesitant, something outside the norm. Nothing Mr. Fixit said could convince Bambam to go down the hill with him. So Bambam watched as everyone else went on a run. And he still refused when Mr. Fixit tried to get him to go along the next time. That is until Miracle Boy asked if he wanted to come sledding with him. With that, he took off in a run with a huge grin and went sledding with "Brother".
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.
Thursday, December 27, 2012
A Fraud
Usually I feel like an open book. I don't really hide much. My life is what it is and if you are willing to listen, I will share it with you. But, lately I've been feeling like a fraud.
I can not tell you how often I hear the words "you are such a great parent" or "I don't know how you do it" or "I could never do what you do" or "Your kids are so lucky to have you" or my favorite (which came from the LRC teacher at school) "Bambam hit the jackpot when he got you for parents". Really??? I don't feel like any of this is true. And if this is the picture I present to you, then I'm a fraud. Because here is what my days are really like:
I barely even say hi to my teenagers as they get themselved up, ready, and out the door to school. Our conversations in the morning exist of "bye mom, we're leaving" answered by me with "have a good day, love you guys". That's it. Most days I don't even know what they are wearing as I'm in my bedroom getting ready when they walk out the door and the words above are yelled down to the front door. Great parenting? I think not.
Bambam watches Curious George and The Cat in the Hat every morning so I can get his breakfast made, our lunches done and get myself ready before getting him ready for school. Seriously, TV first thing in the morning, every morning. And, I don't have time in the mornings to patiently wait and work with him on dressing himself. I know more than anyone that we are supposed to work on adaptive skills. I just don't have time in the mornings so I still dress him at 7 years old. Some days we are still late for school. Not exactly parent of the year.
My teenagers go either straight to their sports practice or to the athletic club from school. Often they are not home by dinner time so we eat in shifts. Sitting down for a family dinner is a rarity at our house. And Bambam doesn't really eat dinner, it's just not his thing. So he sits in the family room doing his iPad while Mr. Fixit and I eat dinner. Now that's good parenting.
The dinner dishes don't always get done after dinner. In fact, some days they don't get done until I get home from work the next day. And my house is not always dusted, vaccumed, swept and mopped. The laundry piles up. I will never win the Betty Homemaker Award.
Miracle Boy has been on the varsity golf team every year in high school. I have never yet watched a golf tournament. In 3 years, I've never seen him play. Granted, they play during the week when I'm either at work or have Bambam with me. And its not convenient. But a great parent would make it happen.
I do not get to all the things I'm supposed to work on with Bambam every day. The fine motor work, gross motor work, sensory diet, academic work, social skills, play dates, adaptive skills, speech and language skills, theraputic listening, brushing, etc. Some days we don't even read for 10 minutes. Some days I fail him miserably.
I am not a great parent. I'm just a parent, just like all the other parents out there. I really want to be a good parent. But life is not perfect. It's messy and chaotic and the days are shorter than necessary. I often make mistakes and fall short. I'm impatient, I yell, I make snap decisions I regret later. And when people tell me what a great parent I am or how lucky my kids are, I feel like a fraud.
I can not tell you how often I hear the words "you are such a great parent" or "I don't know how you do it" or "I could never do what you do" or "Your kids are so lucky to have you" or my favorite (which came from the LRC teacher at school) "Bambam hit the jackpot when he got you for parents". Really??? I don't feel like any of this is true. And if this is the picture I present to you, then I'm a fraud. Because here is what my days are really like:
I barely even say hi to my teenagers as they get themselved up, ready, and out the door to school. Our conversations in the morning exist of "bye mom, we're leaving" answered by me with "have a good day, love you guys". That's it. Most days I don't even know what they are wearing as I'm in my bedroom getting ready when they walk out the door and the words above are yelled down to the front door. Great parenting? I think not.
Bambam watches Curious George and The Cat in the Hat every morning so I can get his breakfast made, our lunches done and get myself ready before getting him ready for school. Seriously, TV first thing in the morning, every morning. And, I don't have time in the mornings to patiently wait and work with him on dressing himself. I know more than anyone that we are supposed to work on adaptive skills. I just don't have time in the mornings so I still dress him at 7 years old. Some days we are still late for school. Not exactly parent of the year.
My teenagers go either straight to their sports practice or to the athletic club from school. Often they are not home by dinner time so we eat in shifts. Sitting down for a family dinner is a rarity at our house. And Bambam doesn't really eat dinner, it's just not his thing. So he sits in the family room doing his iPad while Mr. Fixit and I eat dinner. Now that's good parenting.
The dinner dishes don't always get done after dinner. In fact, some days they don't get done until I get home from work the next day. And my house is not always dusted, vaccumed, swept and mopped. The laundry piles up. I will never win the Betty Homemaker Award.
Miracle Boy has been on the varsity golf team every year in high school. I have never yet watched a golf tournament. In 3 years, I've never seen him play. Granted, they play during the week when I'm either at work or have Bambam with me. And its not convenient. But a great parent would make it happen.
I do not get to all the things I'm supposed to work on with Bambam every day. The fine motor work, gross motor work, sensory diet, academic work, social skills, play dates, adaptive skills, speech and language skills, theraputic listening, brushing, etc. Some days we don't even read for 10 minutes. Some days I fail him miserably.
I am not a great parent. I'm just a parent, just like all the other parents out there. I really want to be a good parent. But life is not perfect. It's messy and chaotic and the days are shorter than necessary. I often make mistakes and fall short. I'm impatient, I yell, I make snap decisions I regret later. And when people tell me what a great parent I am or how lucky my kids are, I feel like a fraud.
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!
Monday, November 26, 2012
That Kid
When Miracle Boy was little and I would take him places that kids like to go, I always noticed That Kid. You know what I'm talking about. That Kid who is just a little too noisy, a bit too rambunctious, too rough or wild, etc. And I would watch That Kid and wonder: Where are his parents? Where is the discipline? What is wrong with him? Yes, I am ashamed to admit that I would watch with judging eyes. Never bothering to wonder what his story was, what his circumstances were.
Now, I have That Kid. As I sit here at the edge of the pool watching Bambam play in the water, I notice that he's splashing a little too hard. Jumping a little too close to the basketball game. Running full speed into the water. He's careful not to actually run into, jump into, or touch anyone else, but he sure gets close and splashes A LOT. And it does not matter how many time I say slow down, calm down, move down the pool; this is who he is. He craves this impact with the water. Its part of the sensory thing. I cannot take him to a pool and expect him to act otherwise, it will never happen.
So I look around at the other parents and I wonder. Which ones are asking themselves where are his parents. And which ones are asking why he's not disciplined. And which ones are wondering what is wrong with him. Because I know it is happening. I know because once upon a time I was That Parent.
Now, I have That Kid. As I sit here at the edge of the pool watching Bambam play in the water, I notice that he's splashing a little too hard. Jumping a little too close to the basketball game. Running full speed into the water. He's careful not to actually run into, jump into, or touch anyone else, but he sure gets close and splashes A LOT. And it does not matter how many time I say slow down, calm down, move down the pool; this is who he is. He craves this impact with the water. Its part of the sensory thing. I cannot take him to a pool and expect him to act otherwise, it will never happen.
So I look around at the other parents and I wonder. Which ones are asking themselves where are his parents. And which ones are asking why he's not disciplined. And which ones are wondering what is wrong with him. Because I know it is happening. I know because once upon a time I was That Parent.
Tuesday, November 13, 2012
Broken Hearted
My heart is breaking. My soul is heavy. I'm not even sure how to express in words the sadness I feel.
I took Bambam in for evaluations today. And all I can say is it was an epic fail. I know people throw that phrase around all to often these days. Its lost some of its meaning. But this was, in every sense an epic failure.
The evaluation was to start with an IQ test, move on the some social response testing, and finish up with some testing for ADHD. He lasted 15 minutes. During which he answered about 3 questions before his anxiety rose to the point that all he would say is "go home now, go home now". He didn't even respond to the question "can you show me your mouth". And I mean no response. Wouldn't look at the psychologist, didn't point, didn't have any expression, just repeated over and over "go home now, go home now." The doctor wisely stopped the testing at that point.
I am desperate. Desperate for some answers. (which I may never get) Desperate for some guidance and a path to follow. Desperate for anything. If no one can administer a meaningful test to this child, how can we determine where he is, what he needs, how best to help him. He knows where his mouth is. But he is unable to function in a testing setting with a stranger he doesn't know. And it breaks my heart to see him with so much anxiety, unable to do the simplest of tasks.
We realize that there is a very good chance we are dealing with some intellectual disability along with the autism. (one of the reason for today's testing) But my 6 year old knows where his mouth is. How do we determine how much of his response (or lack there of) is the result of intellectual disability and how much is the result of autism or anxiety or dyspraxia or sensory processing disorder or any of the many other labels that have been attached to him? Its overwhelming. And heartbreaking.
The next best thing is to have us, his parents, fill out several questionnaires about his behavior and abilities. I hate these. We've done them before on many occasions. And it never gets any easier. Being faced in black and white with the struggles my child faces on a daily basis is hard. Hard really isn't the right word. It's heartbreaking. Really. No, my 6 year old is not completely potty trained. No, my 6 year old cannot button his shirt independently. No, my 6 year old does not know his phone number, cannot read, does not play with peers his age... Yes, he perseverates on the same topics, talks incessantly, doesn't understand facial expressions... The questions go on, and on, and on. And I know all of this, I see it every day. But to have to put it down on paper where everyone can see it in black and white. Well, it nearly breaks my heart.
This is such a painful process. But I am so desparate for answers, or at least some guidance and help. And I'm not sure I'm going to get it. My heart is breaking and my soul is heavy.
I took Bambam in for evaluations today. And all I can say is it was an epic fail. I know people throw that phrase around all to often these days. Its lost some of its meaning. But this was, in every sense an epic failure.
The evaluation was to start with an IQ test, move on the some social response testing, and finish up with some testing for ADHD. He lasted 15 minutes. During which he answered about 3 questions before his anxiety rose to the point that all he would say is "go home now, go home now". He didn't even respond to the question "can you show me your mouth". And I mean no response. Wouldn't look at the psychologist, didn't point, didn't have any expression, just repeated over and over "go home now, go home now." The doctor wisely stopped the testing at that point.
I am desperate. Desperate for some answers. (which I may never get) Desperate for some guidance and a path to follow. Desperate for anything. If no one can administer a meaningful test to this child, how can we determine where he is, what he needs, how best to help him. He knows where his mouth is. But he is unable to function in a testing setting with a stranger he doesn't know. And it breaks my heart to see him with so much anxiety, unable to do the simplest of tasks.
We realize that there is a very good chance we are dealing with some intellectual disability along with the autism. (one of the reason for today's testing) But my 6 year old knows where his mouth is. How do we determine how much of his response (or lack there of) is the result of intellectual disability and how much is the result of autism or anxiety or dyspraxia or sensory processing disorder or any of the many other labels that have been attached to him? Its overwhelming. And heartbreaking.
The next best thing is to have us, his parents, fill out several questionnaires about his behavior and abilities. I hate these. We've done them before on many occasions. And it never gets any easier. Being faced in black and white with the struggles my child faces on a daily basis is hard. Hard really isn't the right word. It's heartbreaking. Really. No, my 6 year old is not completely potty trained. No, my 6 year old cannot button his shirt independently. No, my 6 year old does not know his phone number, cannot read, does not play with peers his age... Yes, he perseverates on the same topics, talks incessantly, doesn't understand facial expressions... The questions go on, and on, and on. And I know all of this, I see it every day. But to have to put it down on paper where everyone can see it in black and white. Well, it nearly breaks my heart.
This is such a painful process. But I am so desparate for answers, or at least some guidance and help. And I'm not sure I'm going to get it. My heart is breaking and my soul is heavy.
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.
Wednesday, October 24, 2012
Least Restrictive Enironment and Inclusion
Mr. Fix it picked up Bambam from school yesterday. This does not happen very often (read hardly ever). But circumstances were such yesterday that he had the privilege of picking up the little man. (Bambam of course loved this, an afternoon with Daddy all to himself!)
So, it seems this led to a comment by Mr. Fix it last night. He indicated that he thought Bambam should be spending more time in his home classroom. This is a little bit of a touchy subject for me. I of course would love nothing more than for Bambam to BE ABLE to spend his whole school day in a typical classroom. Is this not one of our end goals? For him to function and learn in a typical classroom? But is that what is best for him right now? I don't believe so. He is simply not there yet.
Time with his typical peers is invaluable to him. He learns so much from them. But as far as being able to concentrate and learn academics in a classroom full of them? Forget it, he simply cannot do it at this time. I've been in there with him, I've seen what its like for him. There is way too much going on. He struggles to focus on one thing, to listen to directions, to even answer simple questions. In the hustle and bustle of dropping him off in the morning, he doesn't even respond to kids saying hi to him. I don't think he even hears them. There is too much background noise, movement, chaos. He doesn't know where to look. A simple task like putting his snack in his cubbie (which he could do with no help or prompting in an empty classroom) requires constant prompting and assistance when all the other kids are there. Right now, I think the best place for him to LEARN is one on one in the Learning Resource Center. And recess, gym, library, field trips, etc are the places he can interact with his typical peers.
I don't believe it will always be this way. He is miles ahead of where he was last year. But it will take more time, maturity, and lots more ability to cope before he can actually sit at a desk in a typical classroom and learn from group instruction. He will get there, I know he will. But we need to be patient.
So, it seems this led to a comment by Mr. Fix it last night. He indicated that he thought Bambam should be spending more time in his home classroom. This is a little bit of a touchy subject for me. I of course would love nothing more than for Bambam to BE ABLE to spend his whole school day in a typical classroom. Is this not one of our end goals? For him to function and learn in a typical classroom? But is that what is best for him right now? I don't believe so. He is simply not there yet.
Time with his typical peers is invaluable to him. He learns so much from them. But as far as being able to concentrate and learn academics in a classroom full of them? Forget it, he simply cannot do it at this time. I've been in there with him, I've seen what its like for him. There is way too much going on. He struggles to focus on one thing, to listen to directions, to even answer simple questions. In the hustle and bustle of dropping him off in the morning, he doesn't even respond to kids saying hi to him. I don't think he even hears them. There is too much background noise, movement, chaos. He doesn't know where to look. A simple task like putting his snack in his cubbie (which he could do with no help or prompting in an empty classroom) requires constant prompting and assistance when all the other kids are there. Right now, I think the best place for him to LEARN is one on one in the Learning Resource Center. And recess, gym, library, field trips, etc are the places he can interact with his typical peers.
I don't believe it will always be this way. He is miles ahead of where he was last year. But it will take more time, maturity, and lots more ability to cope before he can actually sit at a desk in a typical classroom and learn from group instruction. He will get there, I know he will. But we need to be patient.
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.
Saturday, September 29, 2012
The Sock Hop
Bambam's school does a back to school sock hop every September. The gym is decorated, the lights dimmed, the music loud, spot lights, disco balls, lots of kids, parents, laughter, fun. Its a familiar scene played in many schools this time of year. Its a time to kick off the new school year, reconnect with families you haven't seen over the summer, meet new families that are joining the school, and just have a good time. Last year we made it as far as the gym doors. That was it. We never made it inside. After 10 minutes, we went back home.
But this year? This year was a whole different story. This year we not only made it into the gym (after a 5 minute wait outside the doors to take everything in), but we stayed for 45 minutes! And there was dancing and eating snacks and saying hi to classmates! Granted, most of the dancing was by himself just at the edge of the dance floor and there were three 5 minute breaks outside and sitting in a (quieter) corner to have snacks. But 45 minutes! And once, he even let one of his classmates take him by the hand to the middle of the dance floor. Where he stood and watched her dance for about 30 seconds before retreating to the edge. But 45 minutes, without a meltdown. And when he said "I go home now", we calmly left. A HUGE success.
In this journey with autism it is so easy to get caught up in the day to day struggles. Some days it feels like we are not making any progress. Many of the same issues rear their annoying heads day after day after day. But when I step back and compare this year to last year, I can see how far he's really come. How much progress he has made. And my heart sings.
But this year? This year was a whole different story. This year we not only made it into the gym (after a 5 minute wait outside the doors to take everything in), but we stayed for 45 minutes! And there was dancing and eating snacks and saying hi to classmates! Granted, most of the dancing was by himself just at the edge of the dance floor and there were three 5 minute breaks outside and sitting in a (quieter) corner to have snacks. But 45 minutes! And once, he even let one of his classmates take him by the hand to the middle of the dance floor. Where he stood and watched her dance for about 30 seconds before retreating to the edge. But 45 minutes, without a meltdown. And when he said "I go home now", we calmly left. A HUGE success.
In this journey with autism it is so easy to get caught up in the day to day struggles. Some days it feels like we are not making any progress. Many of the same issues rear their annoying heads day after day after day. But when I step back and compare this year to last year, I can see how far he's really come. How much progress he has made. And my heart sings.
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.
Thursday, August 30, 2012
Panic
The panic is creeping in. I feel it in my bones, pulsing through my veins. It's the kind of panic that wakes me up at night. I may be over reacting, probably am. But it's how I respond.
School is starting in less than a week, 5 days. Bambam is transitioning into first grade. And we do not have an IEP in place, we have no plan for supports, no 1 to 1 aid. He has not met his teacher or seen his classroom. I have no idea how he is going to make it through a 6 hour day of first grade.
This child who struggles with transitions and change, who struggles to sit for 20 minutes of table work, who cannot follow multiple step directions, who has visual and auditory sensitivities, who struggles just to BE in a classroom, let alone function appropriately and learn. This child who had a 1 to 1 aid in kindergarten and still had to leave the classroom every 20-30 minutes to decompress and regroup. How will he possibly make it through 6 hours of a chaotic first grade class?
I know deep down that his school will take care of him. We are one of the lucky ones with an amazing team who do everything they can to help Bambam reach his potential. They care about him, they enjoy him, they celebrate his talents, they do what they can to alleviate his struggles. They are honesty on his side and we refer to them as "Team Bambam". Even so, I feel unprepared. And that makes me uncertain how to prepare Bambam. And he needs preparation.
Even with preparation and supports in place, first grade is going to be a stretch. I worry daily about this. What will we do if he cannot function through a 6 hour day? Will we need to consider a "self-contained" classroom? This is one of my biggest fears. He learns so much from being around his typical peers, I do not want him isolated. The panic is creeping in.
School is starting in less than a week, 5 days. Bambam is transitioning into first grade. And we do not have an IEP in place, we have no plan for supports, no 1 to 1 aid. He has not met his teacher or seen his classroom. I have no idea how he is going to make it through a 6 hour day of first grade.
This child who struggles with transitions and change, who struggles to sit for 20 minutes of table work, who cannot follow multiple step directions, who has visual and auditory sensitivities, who struggles just to BE in a classroom, let alone function appropriately and learn. This child who had a 1 to 1 aid in kindergarten and still had to leave the classroom every 20-30 minutes to decompress and regroup. How will he possibly make it through 6 hours of a chaotic first grade class?
I know deep down that his school will take care of him. We are one of the lucky ones with an amazing team who do everything they can to help Bambam reach his potential. They care about him, they enjoy him, they celebrate his talents, they do what they can to alleviate his struggles. They are honesty on his side and we refer to them as "Team Bambam". Even so, I feel unprepared. And that makes me uncertain how to prepare Bambam. And he needs preparation.
Even with preparation and supports in place, first grade is going to be a stretch. I worry daily about this. What will we do if he cannot function through a 6 hour day? Will we need to consider a "self-contained" classroom? This is one of my biggest fears. He learns so much from being around his typical peers, I do not want him isolated. The panic is creeping in.
Wednesday, August 22, 2012
What Happened to Common Sense?
I've had a couple of experiences lately that have made me wonder what has happened to common sense. I understand rules and the need for them. In fact, for the most part I'm all about following the rules. Not doing so gives me anxiety. But, having an autistic son has also made me realize there are times when common sense must trump the rules. At least when it's ethical, moral, and legal to do so. I have my limits to breaking the rules.
Recently Mr. Fixit brought a new pair of sandals home for Bambam. That child is harder on shoes than any kid I've ever known. He goes through 5 pairs of tennis shoes every year, 2-3 sandals every summer, and countless water shoes for the pool. And he has bad feet so no synthetic materials, must have Velcro, yadah, yadah, yadah. We need a separate fund just to keep the child in shoes. But that is a different post. Bambam loved the sandals and they fit, success! However, the very first time he wore them, the strap broke. Now I'm the first to admit that he's hard on shoes, but the first time? That is unacceptable. Insert into my busy day a stop at the store to exchange them.
Off to the store I go, Bambam in tow. Anyone with a kid on the spectrum knows that shopping with them is interesting at best, traumatic at worst. The lady at the counter is quick to inform me that without a receipt I cannot get a refund. OK, I don't want a refund. I want sandals for my kid. She takes us back to the clearance section (it is mid August) where they have a 2, 5, and 6 left. He wears a 2, awesome. She takes them out of the box and stands there while I try them on him. They fit, he likes them, no meltdowns while trying them on, success! I'm thinking this is a great trip to the store.
Then I follow her back to the checkout where she informs me that I have to take the sandals off Bambam so she can verify they are the same size and then I can put them back on. At which point Bambam starts crying and shouting "no shoes off, no shoes off". He's hypersensitive about his feet and he's quickly melting down. All I want to do is pay the difference and get him out of the store as soon as possible. So I say, "The only sizes back there were a 2, a 5, and a 6. It's clear he doesn't have a 2 and a 5, or a 2 and a 6, you could see the size difference. And you handed me the shoes from the box. Can you make an exception please?" To which she replied, "It's the rule, you have to take the sandals off so I can check the sizes." Really? What happened to common sense? At this point if I try to take those sandals off, he will start kicking. I've been kicked too many times.
I'm standing there not really sure what to do. What I want to say is, "Lady, I am not taking those sandals off. If you want to do it, you have my blessing. Go for it." But I bite my tongue. Many thoughts run through my head at the speed of light. One is to tell her he is autistic. To her I'm sure he looks like a spoiled 8 year old having a tantrum. He has no outward appearance of being different or special needs. But he's a 6 year old autistic child who is now in the full throws of a meltdown. This will not get better until I get him out of the store. So I have to make a decision, tell her or not. I struggle with this one constantly.
I do not like to wave the autism flag like a free pass. And I REALLY do not like to do it in front of him. Who knows what he comprehends from that. I don't ever want him to feel damaged or sub-par, or to use the autism as an excuse for not trying his hardest. We really work with Bambam to act appropriately and try to provide the supports he needs to do so. But there comes a time when we must cut our losses and run for the hills, regroup, and try again next time. We had passed that point 10 minutes ago.
I honestly do not know how the situation was resolved. I know I did not take the shoes off, I paid the extra $1.19 and we left the store as quickly as possible. But with a 6 year old screaming at my side, I do not know what she or the manager (who had miraculously appeared) said to me. All I heard was "no shoes off, no shoes off". This was not our finest hour.
Now, in reflecting on this whole scenario, I'm still wondering what happened to common sense. And what I could have done better.
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