Proactive Parenting (7)
Lead, Follow and Find Help!
6/11/14
There is so much more to bicycling with Jake than exercise and fun. The life lessons learned on two wheels are abundant and lasting and Jake relies on both of his parents, as well as a team of professionals, for input and direction.
Yes he has learned if he does not like my answer, he’ll ask Chris.
Even though biking guarantees a certain freedom for Jake and near cardiac arrest for mom and dad, we have been venturing out often and investigating new trails, paths and sidewalks that surround Washington D.C.
Letting Jake adventure ahead of us, builds his confidence and self-esteem.
I usually take him out alone for rides on wide trails that are sparsely populated in the early morning hours. If the trail is wide enough I let him take the lead. If it’s a paved pathway with two-way traffic marked, I usually pull ahead.
When the road is wide open give them a shot.
I have written before about how Jake delights in screaming “On Your Left” to any biker whether they are oncoming or passing us. He rings his bell every 10 seconds even when not needed and swerves around walkers leaving just inches to spare.
Along this road there will be many close calls at high speed, just grip the handlebars and smile.
This past weekend, Chris was able to ride along with us as we logged 21.25 miles. While we rode, I took the lead as we navigated the pathway loaded with tons of walkers, joggers and bikers. Chris rode behind him to make sure Jake stayed in the proper lane. As we were riding, I felt a certain relief having Chris pulling up the rear.
I could relax and enjoy the ride, knowing I had support around me.
Keeping Jake on the right track involves much more than shouting “on your left!” or “stay in your lane!” It is constant correction, guidance and encouragement. The reinforcement to drive the straight and narrow must come from all directions.
One of us needs to lead the way. Setting the example of right vs. wrong and good decisions vs. not-so-great choices becomes a very important job, but so does the position of picking up the pieces when things fall apart.
While I’m leading, I don’t always see what’s happening behind me, but Chris was there to catch Jake if he fell. While I had to rely on hearing the screams “On your left,” to judge how close they were behind me, Chris was able to coach and encourage as well.
These positions of leader and guider will ebb and flow daily, sometimes hourly and remain in place for the rest of Jake’s life; someone to lead and someone to help him up. Whether he is 11 years old or 25 it’s crucial that our super hero kids have gentle, though not overbearing, guidance and unending encouragement.
No matter your trail leads you and your super hero, build a network of support around your family. Whether it’s a spouse, best friend, relative or professional network, no one should have to do this job alone.
6/11/14
There is so much more to bicycling with Jake than exercise and fun. The life lessons learned on two wheels are abundant and lasting and Jake relies on both of his parents, as well as a team of professionals, for input and direction.
Yes he has learned if he does not like my answer, he’ll ask Chris.
Even though biking guarantees a certain freedom for Jake and near cardiac arrest for mom and dad, we have been venturing out often and investigating new trails, paths and sidewalks that surround Washington D.C.
Letting Jake adventure ahead of us, builds his confidence and self-esteem.
I usually take him out alone for rides on wide trails that are sparsely populated in the early morning hours. If the trail is wide enough I let him take the lead. If it’s a paved pathway with two-way traffic marked, I usually pull ahead.
When the road is wide open give them a shot.
I have written before about how Jake delights in screaming “On Your Left” to any biker whether they are oncoming or passing us. He rings his bell every 10 seconds even when not needed and swerves around walkers leaving just inches to spare.
Along this road there will be many close calls at high speed, just grip the handlebars and smile.
This past weekend, Chris was able to ride along with us as we logged 21.25 miles. While we rode, I took the lead as we navigated the pathway loaded with tons of walkers, joggers and bikers. Chris rode behind him to make sure Jake stayed in the proper lane. As we were riding, I felt a certain relief having Chris pulling up the rear.
I could relax and enjoy the ride, knowing I had support around me.
Keeping Jake on the right track involves much more than shouting “on your left!” or “stay in your lane!” It is constant correction, guidance and encouragement. The reinforcement to drive the straight and narrow must come from all directions.
One of us needs to lead the way. Setting the example of right vs. wrong and good decisions vs. not-so-great choices becomes a very important job, but so does the position of picking up the pieces when things fall apart.
While I’m leading, I don’t always see what’s happening behind me, but Chris was there to catch Jake if he fell. While I had to rely on hearing the screams “On your left,” to judge how close they were behind me, Chris was able to coach and encourage as well.
These positions of leader and guider will ebb and flow daily, sometimes hourly and remain in place for the rest of Jake’s life; someone to lead and someone to help him up. Whether he is 11 years old or 25 it’s crucial that our super hero kids have gentle, though not overbearing, guidance and unending encouragement.
No matter your trail leads you and your super hero, build a network of support around your family. Whether it’s a spouse, best friend, relative or professional network, no one should have to do this job alone.
Start Early and Stay Late
August 17, 2012
The latest data estimate that 1 in 88 American children has some form of autism spectrum disorder. That's a 78% increase compared to a decade ago, according a report by the Centers for Disease Control and Prevention.
I’ve wanted to write this blog for many weeks, but struggled with sounding all-knowing or self-righteous. I’ve started, I’ve stopped, and then started again and now here we are. I have to get it out of my head. Please don’t read anything into these words except the simple message: Start early, stay late, for the sake of your child.
Anyone in this ever-growing spectrum circle has surely heard that early intervention is key. It is not the end-all be-all but it is crucial to your child’s chance at recovery. The CDC states that when children are diagnosed with an autism spectrum disorder between ages of 4 and 5 the child’s brain is already more developed and harder the change.
Early recognition of signs of autism -- a neurodevelopment disorder that leads to impaired language, communication and social skills -- is vital because it can lead to early intervention, says Dr. Gary Goldstein, an autism specialist and president of the Kennedy Krieger Institute in Baltimore.
"There have been studies -- double-blinded studies -- to show that behavioral early intervention changes the outcome for children," Goldstein says in an article published March 29, 2012.
There are days when I feel like we started late by waiting until Jake was nearly 3 to really jump into action. However, we had to get through the "mourning period" some families deal with when learning their perfect child is differently-abled. I cannot regret nor change the past so we press on.
In the past few weeks, I’ve met three people who have children struggling with different challenges, so they tell me, yet they haven’t done anything to seek help. I cannot tell you how heart breaking this is to see parents, for whatever reason, not helping their child succeed and fit into society. Isn’t that the dream of any parent?
While picking up meat at the deli, a woman nearby who is very familiar with our family, asked me about a place to get speech help for her son. I mentioned a couple places I know of, and the general rates of private speech tutors and her face fell. The cost at this point was just too steep.
As tears brimmed her eyes, I asked her if he has an IEP and why speech isn’t included with his public school education. She explained to me that there’s no speech pathologist available for him at his current school: a local COLLEGE campus!!!
I had everything I could do to not slap her silly. Really??? I struggled to stay calm as I asked her what’s the biggest issue with her now 22 year old, assuming it was just something very minor. She then explained that he doesn’t really talk.
Take a minute and sit with that.
Your child hasn’t really talked for 20+ years and help was never sought. She said now that he’s in college the professors and students are making him speak out in class and he can’t. This story makes me so sad.
Then, literally the next day, I was at the local post office and started a conversation with a worker there. I must have had on an Autism Speaks shirt or something because she started asking questions as well. Turns out she has an 11-year-old child who doesn’t speak either. I asked if he had autism and she rolled her eyes and told me that he was never diagnosed even though all his teachers over the past 3 years all thought he was on the spectrum. She then went on to explain that they have a bilingual household so he’s supposed to talk later, anyway.
11 years.
Someone please help me understand what the problem is? How can a parent ignore signs of a struggling child, teacher’s recommendations and their own gut instincts to deny helping their child?
I understand that there could be a huge denial piece to this puzzle. Many friends and other autism parents have explained to me that IF there is a genetic link in autism some parents struggle with guilt. I do understand this connection even though we are adoptive parents. We have our own issues, trust me!
Psychologists and doctor friends have had to explain to me that if the parent feels like they are responsible for their child’s disability they often times delay getting help which can be detrimental.
These kids are the future of our country. Reports show there are roughly 1.5 million people are living on the spectrum in this country. Imagine how many there will be in 10 years! Please give them a fighting chance at employment, independence, and success by starting early and staying late! If your child shows any autism-like behaviors, delayed speech or difficulty communicating get them checked. Do something to help them make sense out of this confusing world.
I’ll shove my soap box back under the bed now and shut up. Thank you!
August 17, 2012
The latest data estimate that 1 in 88 American children has some form of autism spectrum disorder. That's a 78% increase compared to a decade ago, according a report by the Centers for Disease Control and Prevention.
I’ve wanted to write this blog for many weeks, but struggled with sounding all-knowing or self-righteous. I’ve started, I’ve stopped, and then started again and now here we are. I have to get it out of my head. Please don’t read anything into these words except the simple message: Start early, stay late, for the sake of your child.
Anyone in this ever-growing spectrum circle has surely heard that early intervention is key. It is not the end-all be-all but it is crucial to your child’s chance at recovery. The CDC states that when children are diagnosed with an autism spectrum disorder between ages of 4 and 5 the child’s brain is already more developed and harder the change.
Early recognition of signs of autism -- a neurodevelopment disorder that leads to impaired language, communication and social skills -- is vital because it can lead to early intervention, says Dr. Gary Goldstein, an autism specialist and president of the Kennedy Krieger Institute in Baltimore.
"There have been studies -- double-blinded studies -- to show that behavioral early intervention changes the outcome for children," Goldstein says in an article published March 29, 2012.
There are days when I feel like we started late by waiting until Jake was nearly 3 to really jump into action. However, we had to get through the "mourning period" some families deal with when learning their perfect child is differently-abled. I cannot regret nor change the past so we press on.
In the past few weeks, I’ve met three people who have children struggling with different challenges, so they tell me, yet they haven’t done anything to seek help. I cannot tell you how heart breaking this is to see parents, for whatever reason, not helping their child succeed and fit into society. Isn’t that the dream of any parent?
While picking up meat at the deli, a woman nearby who is very familiar with our family, asked me about a place to get speech help for her son. I mentioned a couple places I know of, and the general rates of private speech tutors and her face fell. The cost at this point was just too steep.
As tears brimmed her eyes, I asked her if he has an IEP and why speech isn’t included with his public school education. She explained to me that there’s no speech pathologist available for him at his current school: a local COLLEGE campus!!!
I had everything I could do to not slap her silly. Really??? I struggled to stay calm as I asked her what’s the biggest issue with her now 22 year old, assuming it was just something very minor. She then explained that he doesn’t really talk.
Take a minute and sit with that.
Your child hasn’t really talked for 20+ years and help was never sought. She said now that he’s in college the professors and students are making him speak out in class and he can’t. This story makes me so sad.
Then, literally the next day, I was at the local post office and started a conversation with a worker there. I must have had on an Autism Speaks shirt or something because she started asking questions as well. Turns out she has an 11-year-old child who doesn’t speak either. I asked if he had autism and she rolled her eyes and told me that he was never diagnosed even though all his teachers over the past 3 years all thought he was on the spectrum. She then went on to explain that they have a bilingual household so he’s supposed to talk later, anyway.
11 years.
Someone please help me understand what the problem is? How can a parent ignore signs of a struggling child, teacher’s recommendations and their own gut instincts to deny helping their child?
I understand that there could be a huge denial piece to this puzzle. Many friends and other autism parents have explained to me that IF there is a genetic link in autism some parents struggle with guilt. I do understand this connection even though we are adoptive parents. We have our own issues, trust me!
Psychologists and doctor friends have had to explain to me that if the parent feels like they are responsible for their child’s disability they often times delay getting help which can be detrimental.
These kids are the future of our country. Reports show there are roughly 1.5 million people are living on the spectrum in this country. Imagine how many there will be in 10 years! Please give them a fighting chance at employment, independence, and success by starting early and staying late! If your child shows any autism-like behaviors, delayed speech or difficulty communicating get them checked. Do something to help them make sense out of this confusing world.
I’ll shove my soap box back under the bed now and shut up. Thank you!
--------------------------------------
Yard Work Eureka
April 25, 2012
If you know me well, you know my favorite outdoor activity is cutting the grass! (I blame this on my dad, for the record.) Oh the hours I spent riding the mower around our acres of land growing up.
These days, I call it my therapy.
It’s instantly gratifying. Going back and forth across the yard creates a perfectly symmetrical pattern in the grass. The smell of the fresh cut, especially those pesky onion grasses, is awesome. I love matching up the lines to make sure they are long and straight, whether diagonal or horizontal to the house. The rhythmic purr of the motor is meditative.
Lordy, now I sound autistic!!
At the end of the last summer and the beginning of this spring, panic set in when my beloved Toro started making this awful “screeching-like” noise and disrupting my weekly, brain-numbing therapy. I know that sometimes I cut when the grass is too long or slightly wet and just thought that was the problem. It persisted as I pushed.
Out of sheer frustration, I took Toro in to the mechanic for a ‘tune up’ a month ago. The older retired war-vet who now runs his own repair shop chuckled as I talked adoringly about my mower. When he caught his labored breath he asked me when the last time I changed the oil was.
“Ummm, never,” I replied nervously. C’mon dude, I can remember oil changes in the car, but my mower? Not since I received it as a birthday present about 3 years ago. So I was totally relieved when he told me that’s surely the cause of the new noise and he’d check it out. $100 later, said mower repair guy with the long scraggly pony-tail reports there’s nothing wrong with the machine. He did however sharpen the blades, change the oil and said go easy on the “gear box”.
The noise persisted.
I stayed frustrated.
Fast forward to today, my third cut of the year. I’m half asleep and the self-propel thingy is dragging me around the yard but there’s only silence. The lovely hum of the mower evenly chopping the heads off my lawn that has basically “gone to seed” as they say, is thrilling me to no end.
Then, it hits me!
The faster I push my Toro, the tighter I squeeze the handles together, the louder the motor screeches. The motor cannot work as fast as I want it to… it's self-propelled!
EUREKA!
If I had a nickel for every time I told Jake to slow down, chill out or be patient, I wouldn’t work another day! The words fly out of my face at various decibel levels on a daily basis. Sometimes I’m screaming, sometimes whispering it during homework, other times it’s at the dinner table.
Our Super Hero moves at the speed of light, always has. Part of it is his sensory dysfunction but part of it is his parents. He observes everything we do, retains and repeats. A type-A Daddy and a type A-minus Mommy create lots action in short amounts of time. We’re highly emotional, extremely passionate and somewhat anal retentive. OK, there, I said it!!
When we move calmly and slowly, Jake moves slower and more relaxed. The harder we push, the more frustrations and tension multiply. When his brain is clear and patient, he can process at his speed, and not feel pressured to please us at ours.
So I’m going to let up on the handle and go easy on the “gear box” for our Super Hero to flourish faster than the dandelions!
Yard Work Eureka
April 25, 2012
If you know me well, you know my favorite outdoor activity is cutting the grass! (I blame this on my dad, for the record.) Oh the hours I spent riding the mower around our acres of land growing up.
These days, I call it my therapy.
It’s instantly gratifying. Going back and forth across the yard creates a perfectly symmetrical pattern in the grass. The smell of the fresh cut, especially those pesky onion grasses, is awesome. I love matching up the lines to make sure they are long and straight, whether diagonal or horizontal to the house. The rhythmic purr of the motor is meditative.
Lordy, now I sound autistic!!
At the end of the last summer and the beginning of this spring, panic set in when my beloved Toro started making this awful “screeching-like” noise and disrupting my weekly, brain-numbing therapy. I know that sometimes I cut when the grass is too long or slightly wet and just thought that was the problem. It persisted as I pushed.
Out of sheer frustration, I took Toro in to the mechanic for a ‘tune up’ a month ago. The older retired war-vet who now runs his own repair shop chuckled as I talked adoringly about my mower. When he caught his labored breath he asked me when the last time I changed the oil was.
“Ummm, never,” I replied nervously. C’mon dude, I can remember oil changes in the car, but my mower? Not since I received it as a birthday present about 3 years ago. So I was totally relieved when he told me that’s surely the cause of the new noise and he’d check it out. $100 later, said mower repair guy with the long scraggly pony-tail reports there’s nothing wrong with the machine. He did however sharpen the blades, change the oil and said go easy on the “gear box”.
The noise persisted.
I stayed frustrated.
Fast forward to today, my third cut of the year. I’m half asleep and the self-propel thingy is dragging me around the yard but there’s only silence. The lovely hum of the mower evenly chopping the heads off my lawn that has basically “gone to seed” as they say, is thrilling me to no end.
Then, it hits me!
The faster I push my Toro, the tighter I squeeze the handles together, the louder the motor screeches. The motor cannot work as fast as I want it to… it's self-propelled!
EUREKA!
If I had a nickel for every time I told Jake to slow down, chill out or be patient, I wouldn’t work another day! The words fly out of my face at various decibel levels on a daily basis. Sometimes I’m screaming, sometimes whispering it during homework, other times it’s at the dinner table.
Our Super Hero moves at the speed of light, always has. Part of it is his sensory dysfunction but part of it is his parents. He observes everything we do, retains and repeats. A type-A Daddy and a type A-minus Mommy create lots action in short amounts of time. We’re highly emotional, extremely passionate and somewhat anal retentive. OK, there, I said it!!
When we move calmly and slowly, Jake moves slower and more relaxed. The harder we push, the more frustrations and tension multiply. When his brain is clear and patient, he can process at his speed, and not feel pressured to please us at ours.
So I’m going to let up on the handle and go easy on the “gear box” for our Super Hero to flourish faster than the dandelions!
-------------------------------------------
"Catch" Autism From Your Kid
March 27, 2012
Mission: possible.
When you have a Super Hero… you need to become a Super Hero!
From the day of diagnosis, we’ve been constantly trying to see things through Jake’s perfect perspective. I’ve actually gotten on the floor and put on my glasses to view the world at his level. I’ve strained my ears to hear what he hears. Blew my nose to smell what he smells.
What is it about spinning that’s so fascinating? How can he pick out the tiniest object in a room full of toys and fixate on it? What is it about that food that’s not perceptively pleasing: is the cheese sticking out of the bun? Is that sticky bun too sticky? The fish too fishy?
It is a strange transformation that occurs, but I’m getting better at it. Through all my attempts to “vet” new situations, new people, and new experiences, we’re better able to think like our kid. I call it survival. The very little things that drive our kid(s) crazy can be spotted and prepared for, but probably NOT prevented. Think like you have autism and life can be easier.
Since I don’t want Jake to suffer any more than he already does, I run through all the senses when considering new experiences. That way we are ready when he hits the floor or elopes from the situation.
What’s he going to see here that will throw him off?
Will something/someone he sees cause him to fixate?
Are there any smells that will offend?
What type of sounds will be barely audible, but just loud enough to rattle his cage?
How many people will be invading his space?
Are the people attending “on the A-team" (understanding – educated folks who get it) or will there be folks who are likely to stare?
Will sand get in his pants, or sticky goo on his hands?
Are there trains nearby? (He’ll hear them and run in that direction)
Is there any situation where spinning objects will consume him?
How long does it take to be served?
Can we sit by a ceiling fan?
Can we take walks/breaks safely?
Which direction will he run?
Some people may say we’re going a little overboard trying to prevent all these things from happening – I AGREE! Heck, it’s tiring, it’s crazy, and he’s going to have to learn to deal with these things eventually, true, just NOT ALL AT ONCE. He has to be exposed to situations slowly. We carefully set him up for “disasters” and teach him how to deal, in controlled settings. Then we prep and practice over and over again.
On the flip side consider this: do I want to be trying to drag/carry my 100lb hitting, kicking, melting-down Super Hero through a public setting with all eyeballs on us? It’s bad enough when some of his usual behaviors draw stares, but the when the big ones happen someone is likely to call the police!
So when we can, we think in Autism. Prep yourself, prep your hero and stay calm (ya right)! Plan exit routes, sit near doors, away from the crowds and bring distractors (drawing books, trucks, big reinforcers). That way when you see things going downhill you have a plan and don’t panic.
If you can’t beat them, JOIN THEM! Be the Super Hero you already are!!! Remember you have that child for a reason and he/she can’t really enjoy life without you.
Happy World Autism Awareness Day!!!
"Catch" Autism From Your Kid
March 27, 2012
Mission: possible.
When you have a Super Hero… you need to become a Super Hero!
From the day of diagnosis, we’ve been constantly trying to see things through Jake’s perfect perspective. I’ve actually gotten on the floor and put on my glasses to view the world at his level. I’ve strained my ears to hear what he hears. Blew my nose to smell what he smells.
What is it about spinning that’s so fascinating? How can he pick out the tiniest object in a room full of toys and fixate on it? What is it about that food that’s not perceptively pleasing: is the cheese sticking out of the bun? Is that sticky bun too sticky? The fish too fishy?
It is a strange transformation that occurs, but I’m getting better at it. Through all my attempts to “vet” new situations, new people, and new experiences, we’re better able to think like our kid. I call it survival. The very little things that drive our kid(s) crazy can be spotted and prepared for, but probably NOT prevented. Think like you have autism and life can be easier.
Since I don’t want Jake to suffer any more than he already does, I run through all the senses when considering new experiences. That way we are ready when he hits the floor or elopes from the situation.
What’s he going to see here that will throw him off?
Will something/someone he sees cause him to fixate?
Are there any smells that will offend?
What type of sounds will be barely audible, but just loud enough to rattle his cage?
How many people will be invading his space?
Are the people attending “on the A-team" (understanding – educated folks who get it) or will there be folks who are likely to stare?
Will sand get in his pants, or sticky goo on his hands?
Are there trains nearby? (He’ll hear them and run in that direction)
Is there any situation where spinning objects will consume him?
How long does it take to be served?
Can we sit by a ceiling fan?
Can we take walks/breaks safely?
Which direction will he run?
Some people may say we’re going a little overboard trying to prevent all these things from happening – I AGREE! Heck, it’s tiring, it’s crazy, and he’s going to have to learn to deal with these things eventually, true, just NOT ALL AT ONCE. He has to be exposed to situations slowly. We carefully set him up for “disasters” and teach him how to deal, in controlled settings. Then we prep and practice over and over again.
On the flip side consider this: do I want to be trying to drag/carry my 100lb hitting, kicking, melting-down Super Hero through a public setting with all eyeballs on us? It’s bad enough when some of his usual behaviors draw stares, but the when the big ones happen someone is likely to call the police!
So when we can, we think in Autism. Prep yourself, prep your hero and stay calm (ya right)! Plan exit routes, sit near doors, away from the crowds and bring distractors (drawing books, trucks, big reinforcers). That way when you see things going downhill you have a plan and don’t panic.
If you can’t beat them, JOIN THEM! Be the Super Hero you already are!!! Remember you have that child for a reason and he/she can’t really enjoy life without you.
Happy World Autism Awareness Day!!!
----------------------------------------------
Eliminate Expectations – Keeping Perspective
November 30, 2011
I’ve been working in the schools lately, public and private, special needs and not. Aside from really feeling like I’m making a difference, I’m learning lots about kids, parents and teachers. Evaluating my own attitude, as painful as it may be.
So many parents get caught up in what the ‘other’ kids are doing compared to what their child is doing. Many find it frustrating their older child likes what they think are ‘baby’ games/toys. Frankly, does it really matter? I have to admit, I struggle with this as well. The world is so competitive; we need to be aware of peer abilities/interests and what skills our kids need to be successful in life.
But the challenge comes in the comparison. I’ve learned it’s fine to be interested in ‘what kids are into’ these days, but do not compare them to your kiddo. Every child, spectrum or not, is so different. Some like reading while others like running, some crave sweets others crave salt. I’ve seen pre-teens sucking their thumbs; having trouble toileting and crying like babies. Everyone is differently gifted and beautifully unique.
This became perfectly clear to me after hearing a group of middle schoolers having a lively discussion about Sesame Street characters. The only reason this caught my attention is because Jake, now 9, is really getting into the games on the Sesame Street website. It had been bothering me and in the front of my brain, if you will. I thought these were games for little kids and didn’t think they were appropriate for my pre-pubescent Super Hero.
These pre-teens were so detailed and determined in their discussion I could barely contain my laughter. I wasn’t laughing at the kids, the fact that these special needs kiddos were engaged in this discussion was so awesome, but I was thinking about Jake. I found myself shaking my head in disgust of myself and my own judgment of Jake. Eeeekkkkk I really need to lighten up.
Much of how we treat our kids is based on our expectation of how they ‘should’ be behaving, according to how their peers act. ‘Should’ is one of the most destructive words in the English language. It brings with it expectation, usually exaggerated or impossible expectations too. It is not fair, nor is it right.
Instead, see your kid as the beautiful individual he/she is. Look backward if only for a minute to see where they’ve come from.
Focus on the future, praise their progress, and ignore the peers.
If they’re playing on the computer, is that something they could have done a month ago? If they’re asking a million questions, could they have done that 6 months ago? Talking, self-feeding and dressing are huge steps for Super heroes. Celebrate the baby steps. Not the leaps and bounds expected of their peer group.
Thanks for listening.
Eliminate Expectations – Keeping Perspective
November 30, 2011
I’ve been working in the schools lately, public and private, special needs and not. Aside from really feeling like I’m making a difference, I’m learning lots about kids, parents and teachers. Evaluating my own attitude, as painful as it may be.
So many parents get caught up in what the ‘other’ kids are doing compared to what their child is doing. Many find it frustrating their older child likes what they think are ‘baby’ games/toys. Frankly, does it really matter? I have to admit, I struggle with this as well. The world is so competitive; we need to be aware of peer abilities/interests and what skills our kids need to be successful in life.
But the challenge comes in the comparison. I’ve learned it’s fine to be interested in ‘what kids are into’ these days, but do not compare them to your kiddo. Every child, spectrum or not, is so different. Some like reading while others like running, some crave sweets others crave salt. I’ve seen pre-teens sucking their thumbs; having trouble toileting and crying like babies. Everyone is differently gifted and beautifully unique.
This became perfectly clear to me after hearing a group of middle schoolers having a lively discussion about Sesame Street characters. The only reason this caught my attention is because Jake, now 9, is really getting into the games on the Sesame Street website. It had been bothering me and in the front of my brain, if you will. I thought these were games for little kids and didn’t think they were appropriate for my pre-pubescent Super Hero.
These pre-teens were so detailed and determined in their discussion I could barely contain my laughter. I wasn’t laughing at the kids, the fact that these special needs kiddos were engaged in this discussion was so awesome, but I was thinking about Jake. I found myself shaking my head in disgust of myself and my own judgment of Jake. Eeeekkkkk I really need to lighten up.
Much of how we treat our kids is based on our expectation of how they ‘should’ be behaving, according to how their peers act. ‘Should’ is one of the most destructive words in the English language. It brings with it expectation, usually exaggerated or impossible expectations too. It is not fair, nor is it right.
Instead, see your kid as the beautiful individual he/she is. Look backward if only for a minute to see where they’ve come from.
Focus on the future, praise their progress, and ignore the peers.
If they’re playing on the computer, is that something they could have done a month ago? If they’re asking a million questions, could they have done that 6 months ago? Talking, self-feeding and dressing are huge steps for Super heroes. Celebrate the baby steps. Not the leaps and bounds expected of their peer group.
Thanks for listening.
-----------------------------------------
Yes You Can!!
March 24, 2011
Three little words that empower parents of special kids to take a risk. I can recall so many situations where we feared what the general public would think almost as much as we feared what would happen if we didn’t take a risk.
Do not be afraid to ask for what you need to make you and your family comfortable. So many people don’t want to make a fuss or call attention to themselves, but believe me it’s better than having restaurant patrons watch a full-out tantrum.
Yes you can request a specific table.
Still to this day we enter a restaurant and Jake walks right to the first worker he sees and blurts out “Can I have a booth in the back, please?” The workers are usually a bit caught off guard, but always oblige. For years we’d ask for a booth in the back but under a fast ceiling fan. That was a tall order to fill, but we were never let down. What’s the harm in asking? You never know unless you try.
Yes you can ask people to turn down the music
Countless times we’ve been in restaurants when the blaring music was even offensive to my ears. Chipotle, ColdStone, and Uncle Julios are our most recent offenders. Chipotle and ColdStone always turn the music down – Uncle Julios may have except we left after Jake tried to get under the table to hide from the blasting tunes.
Yes you can bring your son into the “mommy bathroom.”
Children with Super Powers may have strengths that escape most common folk, but they are also perfect victims. Because of language delays, lack of ability to notice proper social cues, and inability to verbalize their feelings our kiddos are prime targets. Do not be ashamed of protecting your child.
Yes you can request that no one sits in “your” pew at church
We sit in the same pew we’ve sat in for 8 years! (Well okay they moved it slightly, but it’s the same one). Bench-mates have come and gone; they’ve criticized and critiqued our behavior. But we remain. I can remember one time when visitors to our church were sitting in our bench. Jake literally fell to the floor and started fitting right then. A dear friend and loyal supporter gently asked the people to move and sit someplace in the church because “this is Jake’s bench”. They moved.
Yes you can educate and advocate
Whether at school, church, amusement parks or restaurants, our kiddos need extra accommodations. Some we choose to fight for, other days there’s no energy for the battle. Instead of getting mad at the looks and fuming under the disapproving stares, take that moment to educate. (I admit I am not an expert at this by any means). But I think it’s part of the job of parenting a Super Hero. By giving us these children we are also given a lot of responsibility and opportunities to educate the world.
Yes You Can!!
March 24, 2011
Three little words that empower parents of special kids to take a risk. I can recall so many situations where we feared what the general public would think almost as much as we feared what would happen if we didn’t take a risk.
Do not be afraid to ask for what you need to make you and your family comfortable. So many people don’t want to make a fuss or call attention to themselves, but believe me it’s better than having restaurant patrons watch a full-out tantrum.
Yes you can request a specific table.
Still to this day we enter a restaurant and Jake walks right to the first worker he sees and blurts out “Can I have a booth in the back, please?” The workers are usually a bit caught off guard, but always oblige. For years we’d ask for a booth in the back but under a fast ceiling fan. That was a tall order to fill, but we were never let down. What’s the harm in asking? You never know unless you try.
Yes you can ask people to turn down the music
Countless times we’ve been in restaurants when the blaring music was even offensive to my ears. Chipotle, ColdStone, and Uncle Julios are our most recent offenders. Chipotle and ColdStone always turn the music down – Uncle Julios may have except we left after Jake tried to get under the table to hide from the blasting tunes.
Yes you can bring your son into the “mommy bathroom.”
Children with Super Powers may have strengths that escape most common folk, but they are also perfect victims. Because of language delays, lack of ability to notice proper social cues, and inability to verbalize their feelings our kiddos are prime targets. Do not be ashamed of protecting your child.
Yes you can request that no one sits in “your” pew at church
We sit in the same pew we’ve sat in for 8 years! (Well okay they moved it slightly, but it’s the same one). Bench-mates have come and gone; they’ve criticized and critiqued our behavior. But we remain. I can remember one time when visitors to our church were sitting in our bench. Jake literally fell to the floor and started fitting right then. A dear friend and loyal supporter gently asked the people to move and sit someplace in the church because “this is Jake’s bench”. They moved.
Yes you can educate and advocate
Whether at school, church, amusement parks or restaurants, our kiddos need extra accommodations. Some we choose to fight for, other days there’s no energy for the battle. Instead of getting mad at the looks and fuming under the disapproving stares, take that moment to educate. (I admit I am not an expert at this by any means). But I think it’s part of the job of parenting a Super Hero. By giving us these children we are also given a lot of responsibility and opportunities to educate the world.
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What In the World Can You Do? AA Day April 2nd
March 15, 2011
As parents of children with Super Powers many days there is NOT. ANOTHER. THING. WE. CAN. DO. The thought of even taking a shower sounds exhausting, making dinner a downright chore, and paying bills -- forget about it.
But also as parents of children with Super Powers, I believe we have the unique opportunity to educate the world. This April 2nd, let’s NOT spend all our energy looking to blame someone for our kids’ differences but, focus on the future of our kids and spend your cherished moments trying to educate others about our kids ABILITIES!
Type up a stat sheet about Autism and distribute at your church, bingo night, library, or sibling’s school.
Educate a local mom’s group about signs and symptoms of Autism and how their child can ‘play’ with ours.
Talk to that neighborhood friend who judges you and your family. Educate, educate, educate.
Support a family with autism by giving the mom a break. (cooking a meal, childcare for an hour, or taking the kids for a walk.)
Speak to your child’s class (mainstream sib class) about learning differences.
Set up a play date with an affected child. Believe me they’d be thrilled.
Donate on line to your local autism speaks or advocacy program.
Take time to educate extended family members, as exhausting as it would be.
Wear blue on April 2nd to raise awareness.
Post a supportive awareness message on your Facebook status to get people talking. Explain how a child with autism has touched your life.
I’d be thrilled if you shared this blog with isolated friends and those that ‘don’t get it’, you know who they are!!!
Please please remember to celebrate the tiny steps our kids take! I know you are exhausted most of the time, but focus on the positives! Tell a friend if your child held a spoon, pooped in the potty, or tied a shoe lace. These are monumental milestones for our kids with Super Powers!
Do not ever be ashamed or embarrassed, BE SO PROUD! You were chosen and God put this precious child in your life or a reason.
What In the World Can You Do? AA Day April 2nd
March 15, 2011
As parents of children with Super Powers many days there is NOT. ANOTHER. THING. WE. CAN. DO. The thought of even taking a shower sounds exhausting, making dinner a downright chore, and paying bills -- forget about it.
But also as parents of children with Super Powers, I believe we have the unique opportunity to educate the world. This April 2nd, let’s NOT spend all our energy looking to blame someone for our kids’ differences but, focus on the future of our kids and spend your cherished moments trying to educate others about our kids ABILITIES!
Type up a stat sheet about Autism and distribute at your church, bingo night, library, or sibling’s school.
Educate a local mom’s group about signs and symptoms of Autism and how their child can ‘play’ with ours.
Talk to that neighborhood friend who judges you and your family. Educate, educate, educate.
Support a family with autism by giving the mom a break. (cooking a meal, childcare for an hour, or taking the kids for a walk.)
Speak to your child’s class (mainstream sib class) about learning differences.
Set up a play date with an affected child. Believe me they’d be thrilled.
Donate on line to your local autism speaks or advocacy program.
Take time to educate extended family members, as exhausting as it would be.
Wear blue on April 2nd to raise awareness.
Post a supportive awareness message on your Facebook status to get people talking. Explain how a child with autism has touched your life.
I’d be thrilled if you shared this blog with isolated friends and those that ‘don’t get it’, you know who they are!!!
Please please remember to celebrate the tiny steps our kids take! I know you are exhausted most of the time, but focus on the positives! Tell a friend if your child held a spoon, pooped in the potty, or tied a shoe lace. These are monumental milestones for our kids with Super Powers!
Do not ever be ashamed or embarrassed, BE SO PROUD! You were chosen and God put this precious child in your life or a reason.