Hands touch yours, "put your hands down", moving them away from the toys. "Stop babbling." Hands pull you, "eyes, please", push you, make you do things. "Focus..." Hands on your arms, legs, shoulders, back. "Time to pay attention." Holding you still, "not right now", you don't want to be still, "don't do that", holding you still.
Frustrating, isn't it?
This is therapy. I would hate therapy.
If someone came to your home and did all of those things to you, they would likely be asked to leave and never return. Yet, we pay people to do this to our children. We even do this to them ourselves.
Not surprising that our children get angry, frustrated, and upset. You would, too.
I know, I know, we don't do it to that extreme. We're nice about it. Patient. We take the time to explain things, nurture them through the process, and encourage them when they do well.
But, do they see it that way?
Imagine you are watching the Super Bowl or talking to a long lost friend you hadn't spoken to in years and a Therapist started working with you. It wouldn't matter how patient, kind or understanding they were, they need to get the heck out of your face before you toss them from your house.
That's the perspective.
Our world is uninteresting. We have nothing here that can properly supplant the amazing imagery happening in our child's mind.
So, what does this mean? No therapy? Abandon the one thing that works? Allow our children to disappear into their world because it's more fun and beautiful?
Of course not.
The challenge I am facing right now is about balance. How much is too much and where is the sweet spot?
For the last two weeks, my daughter has opened up, connected, and reached out to those around her more than she has in the last six months. She has been actively engaging people, expressing her needs without incident, and trying, on her own, to develop her language.
Oh, and she wasn't receiving home therapy during this time.
She started again yesterday and had a major meltdown during and afterwards. She was also nervously licking her lips to the point of bleeding and she was no longer "aware".
She had completely locked down. One day of therapy.
The therapy hadn't changed, the therapist was known to her and the methods were familiar to her. She was simply done. She wanted no more and was through being told what to do all the time.
Now, before I get a hundred responses asking which/what/who/how, I will tell you that we are transitioning from ABA to Adaptive Skills because she is ready to branch out. We also stopped therapy again today to give her a break and see how she responds.
"I'm lucky and Daddy's lucky." she said on the way home from school.
"Daddy's lucky to have you as his daughter." I reply.
(She nods) "Yeah...".
She was back. Clear as day. She had already been told that therapy was cancelled and she was open to opening up again.
I write this not to condemn therapy. Not at all. It has brought my daughter from the shadows into the light in so many ways. She would not have been able to have that small conversation with me were it not for her incredible therapists. I am forever grateful for them.
My intent is to illustrate balance. Know what is happening in the sessions, think about how it might affect you, listen to your child and their expressions, understand the impact and adjust accordingly.
We are changing my daughter's routine because she is ready for the change. She had been telling us, through meltdowns and babbling, that she has moved on from this style.
We are listening.
Wednesday, April 17, 2013
Monday, April 15, 2013
Boston Marathon...
You wake up and look outside...excited about the day to come. You checked the weather 3 times yesterday, but you still need to see it for yourself. Partly cloudy and 60's.
Perfect day to watch the Marathon.
It's still early, the sun barely over the horizon, and yet you can hear your daughter stirring in her room. A small smile creeps over your face. She's excited about today, too.
You sneak into her room and put your face next to her "sleeping" ear. You whisper "you awake?" and she starts giggling. She turns and gives you a big hug.
"I love you, Daddy!".
"I love you, too. Let's go get some breakfast, do some shopping and walk over to the Finish Line."
You hold her hand on the way to the Deli, a favorite of hers, and smile at all of the other kids walking in the street with their parents. Today is a Holiday for the kids of Boston, you hope they have fun out there. Images of frisbees with your father and Red Sox games fill your head.
Today has always been a special day for you. It's always been a special day for your daughter, too.
You pick up a couple of egg, ham and cheese sandwiches at the Deli and head to the shops at Copley Place. You figure it will be a while and it's not that far to Boylston Street.
She decides she wants to shop for Summer dresses, your little girl is growing up. She grabs a few off the rack and twirls for you; you can't help but laugh.
You get some lunch from the food court and begin the crowd-filled walk to the Finish Line. You didn't expect it to be so busy, but everyone is polite, happy and having a good time. There's no pushing, no angry voices, even the cars seem to have lost their horns. You've missed the first finishers by a couple of hours, but there are still a lot of runners coming in.
You lift her onto your shoulders as you make the turn onto Boylston Street, but there's no room, so you move a little ways back from the Line.
Your daughter points and yells "I can see them, Daddy!".
Without warning, you are violently pushed to the ground and your daughter is sent flying from your shoulders. There is smoke and noise and people and wreckage everywhere. The sounds are overwhelming as you lift your head from the ground. You look for her, but can't see through the smoke. People try to help you, but you just want to find your daughter. She couldn't have fallen that far, right?
You run to the pile of chairs, tables and bent gate frames and hope that she's not under there. You start lifting, but it's too heavy. You scream for help, but your voice is lost in the other screams. As you turn your head to look for help, you see the yellow of your daughter's new dress under the wreckage 10 feet away, her hand sticking out from under a chair.
Everything stops. All sound, all movement. Nothing matters but that dress and that hand as you rush over and lift the chair.
She's not moving, she's not breathing, her hair covered in blood. Your daughter's blood. You pick up her limp body and carry her to the police nearby, screaming wordlessly for help. They quickly lay her on a stretcher and try to stop the bleeding. One of them looks at the other knowingly.
She's gone.
Your angel, your princess, the girl you tease every morning and kiss before bed every night is gone. You don't understand, you don't know what to do, you just want her back.
What did she have to do with this? Why did she have to die? What could she have possibly done to offend someone so much that they took her away at 8 years old?
----
I hope those who would think about perpetrating this kind of act understand the impact. I hope they think about the innocents and reconsider. I hope someone finds those who did this today and holds them to justice.
I hope this never happens again.
Perfect day to watch the Marathon.
It's still early, the sun barely over the horizon, and yet you can hear your daughter stirring in her room. A small smile creeps over your face. She's excited about today, too.
You sneak into her room and put your face next to her "sleeping" ear. You whisper "you awake?" and she starts giggling. She turns and gives you a big hug.
"I love you, Daddy!".
"I love you, too. Let's go get some breakfast, do some shopping and walk over to the Finish Line."
You hold her hand on the way to the Deli, a favorite of hers, and smile at all of the other kids walking in the street with their parents. Today is a Holiday for the kids of Boston, you hope they have fun out there. Images of frisbees with your father and Red Sox games fill your head.
Today has always been a special day for you. It's always been a special day for your daughter, too.
You pick up a couple of egg, ham and cheese sandwiches at the Deli and head to the shops at Copley Place. You figure it will be a while and it's not that far to Boylston Street.
She decides she wants to shop for Summer dresses, your little girl is growing up. She grabs a few off the rack and twirls for you; you can't help but laugh.
You get some lunch from the food court and begin the crowd-filled walk to the Finish Line. You didn't expect it to be so busy, but everyone is polite, happy and having a good time. There's no pushing, no angry voices, even the cars seem to have lost their horns. You've missed the first finishers by a couple of hours, but there are still a lot of runners coming in.
You lift her onto your shoulders as you make the turn onto Boylston Street, but there's no room, so you move a little ways back from the Line.
Your daughter points and yells "I can see them, Daddy!".
Without warning, you are violently pushed to the ground and your daughter is sent flying from your shoulders. There is smoke and noise and people and wreckage everywhere. The sounds are overwhelming as you lift your head from the ground. You look for her, but can't see through the smoke. People try to help you, but you just want to find your daughter. She couldn't have fallen that far, right?
You run to the pile of chairs, tables and bent gate frames and hope that she's not under there. You start lifting, but it's too heavy. You scream for help, but your voice is lost in the other screams. As you turn your head to look for help, you see the yellow of your daughter's new dress under the wreckage 10 feet away, her hand sticking out from under a chair.
Everything stops. All sound, all movement. Nothing matters but that dress and that hand as you rush over and lift the chair.
She's not moving, she's not breathing, her hair covered in blood. Your daughter's blood. You pick up her limp body and carry her to the police nearby, screaming wordlessly for help. They quickly lay her on a stretcher and try to stop the bleeding. One of them looks at the other knowingly.
She's gone.
Your angel, your princess, the girl you tease every morning and kiss before bed every night is gone. You don't understand, you don't know what to do, you just want her back.
What did she have to do with this? Why did she have to die? What could she have possibly done to offend someone so much that they took her away at 8 years old?
----
I hope those who would think about perpetrating this kind of act understand the impact. I hope they think about the innocents and reconsider. I hope someone finds those who did this today and holds them to justice.
I hope this never happens again.
Princess Class - Performance Day...
So, this is it. The day is here. After several weeks of rehearsal, the moment has finally arrived.
The Redhead performs today.
As we are driving to the studio, she seems calm, cool and collected. No nerves, at least not in the back seat.
Papa Bear can barely drive straight, his hands are numb and cold. Nervous, anxious, excited and fearful.
I want this to go well for her. I want her to feel that success after the work and anticipation.
This is her first performance where she has lines and sings solo.
We arrive and head backstage. She goes potty, always important before putting on the costume, and gets into her Princess dress.
Ariel. My daughter will be playing Ariel.
I give her a kiss on the forehead and remind her to focus and be loud. She looks me dead in the eye and says "Daddy, audience!" and points to the front of the house.
Time to let the little bird fly.
I take my seat and get the camera ready, hoping to keep my hands steady.
The shows begins.
The next 45 minutes are a blur, but I remember several important things:
• She was fully engaged.
• She remembered and spoke all of her lines on cue.
• She LOVED every moment.
• I may have cried during her song.
• She did amazing!
She absolutely lit up the stage and was the focus of every eye. Sometimes because she was smiling at the audience and other times because she was simply adorable and spunky.
I couldn't be prouder. More importantly, though, is that she was proud of herself. A feeling so rare, so vital that I can't wait to see her shine again.
The Redhead performs today.
As we are driving to the studio, she seems calm, cool and collected. No nerves, at least not in the back seat.
Papa Bear can barely drive straight, his hands are numb and cold. Nervous, anxious, excited and fearful.
I want this to go well for her. I want her to feel that success after the work and anticipation.
This is her first performance where she has lines and sings solo.
We arrive and head backstage. She goes potty, always important before putting on the costume, and gets into her Princess dress.
Ariel. My daughter will be playing Ariel.
I give her a kiss on the forehead and remind her to focus and be loud. She looks me dead in the eye and says "Daddy, audience!" and points to the front of the house.
Time to let the little bird fly.
I take my seat and get the camera ready, hoping to keep my hands steady.
The shows begins.
The next 45 minutes are a blur, but I remember several important things:
• She was fully engaged.
• She remembered and spoke all of her lines on cue.
• She LOVED every moment.
• I may have cried during her song.
• She did amazing!
She absolutely lit up the stage and was the focus of every eye. Sometimes because she was smiling at the audience and other times because she was simply adorable and spunky.
I couldn't be prouder. More importantly, though, is that she was proud of herself. A feeling so rare, so vital that I can't wait to see her shine again.
Awareness...
We use that word all the time, for so many reasons, it has been diluted and misconstrued.
So, April is Autism Awareness Month. But, what does that mean?
More importantly, what do we hope to gain with all of this awareness?
For me, awareness is about opening your eyes and your mind to the complexity of something, rather than believing your initial reaction or societal stereotypes.
In many cases, this means allowing yourself to be wrong, accepting new information and letting go of your own preconceptions.
Now, what do we hope to gain from all of this awareness?
I think that's a very personal question. Not personal in the sense of intrusion, but personal in the sense that each person has their own answer.
For me, I hope that people take the time to understand the issues, rather than just listen to the news.
I hope they find beauty in the many autistic people out there, rather than simply focusing on a cure.
I hope the efforts and services double/triple/quadruple due to the knowledge gained by becoming aware of the hourly challenges faced by autistic households.
I hope businesses open their doors to autistic adults and find more jobs for them.
I hope schools receive more training and our teachers additional support.
I hope my daughter will be accepted wherever she goes...as an individual, as a contributor, as much more than special needs.
I hope her future is just as bright as any other child's.
Awareness...such a powerful thing.
So, April is Autism Awareness Month. But, what does that mean?
More importantly, what do we hope to gain with all of this awareness?
For me, awareness is about opening your eyes and your mind to the complexity of something, rather than believing your initial reaction or societal stereotypes.
In many cases, this means allowing yourself to be wrong, accepting new information and letting go of your own preconceptions.
Now, what do we hope to gain from all of this awareness?
I think that's a very personal question. Not personal in the sense of intrusion, but personal in the sense that each person has their own answer.
For me, I hope that people take the time to understand the issues, rather than just listen to the news.
I hope they find beauty in the many autistic people out there, rather than simply focusing on a cure.
I hope the efforts and services double/triple/quadruple due to the knowledge gained by becoming aware of the hourly challenges faced by autistic households.
I hope businesses open their doors to autistic adults and find more jobs for them.
I hope schools receive more training and our teachers additional support.
I hope my daughter will be accepted wherever she goes...as an individual, as a contributor, as much more than special needs.
I hope her future is just as bright as any other child's.
Awareness...such a powerful thing.
Dadvice - Theme Parks...
I just got off the phone with Legoland. I spent 40 minutes on hold and was finally connected to a nice lady from purchasing. I asked about scooter availability and guest assistance for autistic children.
She put me on hold several times as she asked around her department for advice. Honestly, she was very helpful and tried her best to get me the information.
Her supervisor instructed her to try to sell me their VIP package as it would get me to the front of the lines. I could tell by her change in tone and vocal patterns that her supervisor was listening in on the call now.
I asked her if there were any guest assistance passes for children with special needs and, after a beat, she said "no, I'm sorry there aren't, but the VIP pass will do the same thing."
I smiled, breathed, and asked to be connected to Guest Services.
I could tell from the relief in her voice that she didn't want to sell me the VIP passes and was happy I asked to be transferred. She also said that it would be best if I called their extension directly as there might be a delay in transfer (ostensibly removing her supervisor from the connection).
I called the Guest Services line and someone picked up right away, no hold time. They informed me that scooter availability is limited and that they DO have guest assistance passes for special needs children.
Another small smile.
The bureaucracy involved in theme parks can often deter parents from pushing too far. Or they can cause you to lose your cool and explode, which usually doesn't lend itself to people wanting to help you.
The lady in purchasing desperately wanted to help me, but was held down by the money making machine. If I had been loud, abrasive or lost my temper, she might not have helped me the way she did. I probably wouldn't have been able to pick up on the subtleties and nuance of her tone and vocal style.
In short, I got what I wanted because I remained calm and kept digging.
Sometimes, the bureaucracy wins. This time, a quiet lady in purchasing beat down the corporate monster with little more than shift in her voice.
Thank you, Tracey from Legoland, for being an advocate in your own way. I am truly grateful.
Autism awareness can be as simple as understanding a need and finding ways to help...even when everything and everyone is fighting against you.
She put me on hold several times as she asked around her department for advice. Honestly, she was very helpful and tried her best to get me the information.
Her supervisor instructed her to try to sell me their VIP package as it would get me to the front of the lines. I could tell by her change in tone and vocal patterns that her supervisor was listening in on the call now.
I asked her if there were any guest assistance passes for children with special needs and, after a beat, she said "no, I'm sorry there aren't, but the VIP pass will do the same thing."
I smiled, breathed, and asked to be connected to Guest Services.
I could tell from the relief in her voice that she didn't want to sell me the VIP passes and was happy I asked to be transferred. She also said that it would be best if I called their extension directly as there might be a delay in transfer (ostensibly removing her supervisor from the connection).
I called the Guest Services line and someone picked up right away, no hold time. They informed me that scooter availability is limited and that they DO have guest assistance passes for special needs children.
Another small smile.
The bureaucracy involved in theme parks can often deter parents from pushing too far. Or they can cause you to lose your cool and explode, which usually doesn't lend itself to people wanting to help you.
The lady in purchasing desperately wanted to help me, but was held down by the money making machine. If I had been loud, abrasive or lost my temper, she might not have helped me the way she did. I probably wouldn't have been able to pick up on the subtleties and nuance of her tone and vocal style.
In short, I got what I wanted because I remained calm and kept digging.
Sometimes, the bureaucracy wins. This time, a quiet lady in purchasing beat down the corporate monster with little more than shift in her voice.
Thank you, Tracey from Legoland, for being an advocate in your own way. I am truly grateful.
Autism awareness can be as simple as understanding a need and finding ways to help...even when everything and everyone is fighting against you.
D Day...
"Autism", the Dr. says.
There are flowers on the walls in his office. Blue, red and pink flowers. The Redhead is looking at the pink flowers...so typical for a 15 month old girl...
The Dr. said it again. "Your daughter has Autism."
I stare at my daughter's face for a while, not really seeing her or anything else in the room.
I knew. Of course she is. I knew this...I knew.
But...um...what?
Autistic? That's just a news story, right? Hype, propaganda, a juicy lead to sell advertising.
My daughter, my beautiful daughter, can't be autistic. She's, I don't know, she's...MY DAUGHTER.
Mama Bear is talking to the Dr. and I am nodding in time with their conversation.
The Redhead laughs at nothing and starts babbling. Typical kids babble at this age, right?
I have so much to teach her, so much to do with her.
How do I protect her from this?
It's almost time to go. I can feel the conversation winding down, the tone final.
The Redhead reaches out and grabs my pinky. Her hands are still so little, so fragile.
My heart races as I kiss the top of her head, tears held back by sheer willpower. She's just a little girl.
She doesn't deserve this.
I pick her up and give her a squeeze, which always seems to relax her. Just a princess being held by her Daddy...must be that.
I lean my head against hers and she presses hers against mine. I whisper "c'mon, Punkin, time to go". She puts her arms around me.
I love her hugs. Open, honest. She shows love so simply.
"I love you, baby. No matter what. Always know that."
I carry her to the reception counter as Mama Bear signs the papers. I see the auburn in Mama's hair, a highlight mirroring her daughter's bright red.
That's right, Papa, she's still just your baby girl. She laughs when you play airplane and giggles at your silly faces.
She's the same. The words didn't change her.
The words changed you.
I let out a short laugh. I should know better. It's just words, just a label. It doesn't change anything, not if I don't let it.
I kiss my daughter's cheek and smile, my heaviness lifted. Mama Bear finishes up and looks at me seriously, worried at my response. She smiles and kisses the Redhead's other cheek.
Just like that. We were on the same page and in this together.
Over 6 years have passed since that day. My daughter still seems to know me before I know myself, my wife still worries.
The word "Autism" no longer scares me. I no longer associate it with loss, grief or fear.
Instead, I think of amazing children and adults who's minds might be different than mine, but their beauty is undeniable.
There are flowers on the walls in his office. Blue, red and pink flowers. The Redhead is looking at the pink flowers...so typical for a 15 month old girl...
The Dr. said it again. "Your daughter has Autism."
I stare at my daughter's face for a while, not really seeing her or anything else in the room.
I knew. Of course she is. I knew this...I knew.
But...um...what?
Autistic? That's just a news story, right? Hype, propaganda, a juicy lead to sell advertising.
My daughter, my beautiful daughter, can't be autistic. She's, I don't know, she's...MY DAUGHTER.
Mama Bear is talking to the Dr. and I am nodding in time with their conversation.
The Redhead laughs at nothing and starts babbling. Typical kids babble at this age, right?
I have so much to teach her, so much to do with her.
How do I protect her from this?
It's almost time to go. I can feel the conversation winding down, the tone final.
The Redhead reaches out and grabs my pinky. Her hands are still so little, so fragile.
My heart races as I kiss the top of her head, tears held back by sheer willpower. She's just a little girl.
She doesn't deserve this.
I pick her up and give her a squeeze, which always seems to relax her. Just a princess being held by her Daddy...must be that.
I lean my head against hers and she presses hers against mine. I whisper "c'mon, Punkin, time to go". She puts her arms around me.
I love her hugs. Open, honest. She shows love so simply.
"I love you, baby. No matter what. Always know that."
I carry her to the reception counter as Mama Bear signs the papers. I see the auburn in Mama's hair, a highlight mirroring her daughter's bright red.
That's right, Papa, she's still just your baby girl. She laughs when you play airplane and giggles at your silly faces.
She's the same. The words didn't change her.
The words changed you.
I let out a short laugh. I should know better. It's just words, just a label. It doesn't change anything, not if I don't let it.
I kiss my daughter's cheek and smile, my heaviness lifted. Mama Bear finishes up and looks at me seriously, worried at my response. She smiles and kisses the Redhead's other cheek.
Just like that. We were on the same page and in this together.
Over 6 years have passed since that day. My daughter still seems to know me before I know myself, my wife still worries.
The word "Autism" no longer scares me. I no longer associate it with loss, grief or fear.
Instead, I think of amazing children and adults who's minds might be different than mine, but their beauty is undeniable.
I'm Afraid...
I'm afraid.
I look into my daughter's eyes and see complete trust there. She has whole-heartedly placed her life in my hands. She believes in my ability to keep her safe, guide her path, and forge her future.
I'm afraid I'll let her down.
I think back to the times in my life when I made the wrong choice, said the wrong thing, or chose the wrong path and I fear that I might do that with her. Not on purpose, of course, but maybe out of ignorance for alternatives or over-cautiousness.
I'm afraid my fear of failure will cause my failure.
I want so much for her. I want her to live on her own terms, to love as fully as possible and to be loved in return. I want her to know independence, confidence and pride. I want her to own a house, drive a car, have a fulfilling job, date (no, really), and be her own woman.
I'm afraid that, years from now, I'll look back and think "If only I did more, worked harder, fought more valiantly, she might be better off..."
Occasionally, I will see her as she sees herself. In her mirror, there is a beautiful, confident, funny girl who is afraid of nothing. She can talk to horses and make flowers grow. She is the reason we are all here on this planet and we are fortunate to know her. OK, see that every time I look at her, but I see so much more. I see the struggle, the frustration, the pain. I see the other children avoiding her, the other parents shunning her, and I see her missing a portion of happiness because of it. I see what she doesn't know because I shelter her from it.
I'm afraid I do too much, not enough, and never the right way.
I'm afraid she will one day regret that I am her father.
I know these fears aren't founded in reality, nor are they derived from harmful actions of a challenging childhood. No, these fears are the balance. The drive me to always keep trying, to always look for more. I will not allow myself to become complacent, but these fears keep me going even on my laziest of days.
She is my Princess. I am her Champion. I am afraid of the Dragon on the hill, but I draw my sword in spite of my fear. It is said that being brave is taking action even when you're afraid.
I am afraid. C'mon, Dragon, do your worst...
I look into my daughter's eyes and see complete trust there. She has whole-heartedly placed her life in my hands. She believes in my ability to keep her safe, guide her path, and forge her future.
I'm afraid I'll let her down.
I think back to the times in my life when I made the wrong choice, said the wrong thing, or chose the wrong path and I fear that I might do that with her. Not on purpose, of course, but maybe out of ignorance for alternatives or over-cautiousness.
I'm afraid my fear of failure will cause my failure.
I want so much for her. I want her to live on her own terms, to love as fully as possible and to be loved in return. I want her to know independence, confidence and pride. I want her to own a house, drive a car, have a fulfilling job, date (no, really), and be her own woman.
I'm afraid that, years from now, I'll look back and think "If only I did more, worked harder, fought more valiantly, she might be better off..."
Occasionally, I will see her as she sees herself. In her mirror, there is a beautiful, confident, funny girl who is afraid of nothing. She can talk to horses and make flowers grow. She is the reason we are all here on this planet and we are fortunate to know her. OK, see that every time I look at her, but I see so much more. I see the struggle, the frustration, the pain. I see the other children avoiding her, the other parents shunning her, and I see her missing a portion of happiness because of it. I see what she doesn't know because I shelter her from it.
I'm afraid I do too much, not enough, and never the right way.
I'm afraid she will one day regret that I am her father.
I know these fears aren't founded in reality, nor are they derived from harmful actions of a challenging childhood. No, these fears are the balance. The drive me to always keep trying, to always look for more. I will not allow myself to become complacent, but these fears keep me going even on my laziest of days.
She is my Princess. I am her Champion. I am afraid of the Dragon on the hill, but I draw my sword in spite of my fear. It is said that being brave is taking action even when you're afraid.
I am afraid. C'mon, Dragon, do your worst...
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