The title today, was stolen from a quote by a United States President, but is relevant to parents in the throes of dealing with a new MH/MR diagnosis. I recently wrote an Autism Awareness article for Main Line Parent Magazine (http://mainlineparent.com/2012/04/autism-awareness-month-advice-resources/ ) which stirred up a lot of old memories of what life was like for our family pre-diagnosis and in the years following.
The lack of affection, the temper tantrums, the sensory sensitivity and consequent behaviors...it was a nightmare, especially when we didn't know what we were dealing with, or where to go for help.
I remember driving up the road toward a specialist appointment, and being in tears. The frustration, the helplessness,feelings of being alone, and overwhelmed...it all came to a head, and I began crying out to God: "When do I get a break?!"
It was at that moment that I stopped at a traffic light near a very old cemetery. There's something soothing about seeing those old stones, with antique script work under those shady trees, and I noticed something that particular day. Something significant.
God had answered my question in that moment.
My eyes rested on gravestones belonging to a husband and wife. Both had passed in the 1700's, and much of the writing was weathered away, except for their names, and "at rest," and "sweet rest" respectively still being visible.
Put your hand over your heart...do you feel that? That's called purpose. As long as we are living, even when it is difficult, even when it feels like another dead end, DON'T GIVE UP!
My grandfather was big on reciting Longfellow's Psalm of Life, but one of the last stanzas always stuck out at me:
"Let us then be up and doing,
With a heart for any fate.
Still achieving, still pursuing,
Learn to labor, and to wait."
As parents of special needs children, this is especially true for us. Don't give up.
Saturday, April 7, 2012
Sunday, March 25, 2012
Conversations with Kelsey: revealing shades of gray
My Kelsey has most vehemently informed me that she does NOT want to go to ESY this year. Apparently, as the weather improves, like most kids her age, summer vacation is on her mind. Add her black and white reasoning, and UGH!
What is ESY? I promise, it's not torture.
It stands for Extended School Year, and is something that many kids with ASD are eligible for, via their IEP's. It translates ( for us) into an additional month of half-days ( morning to noon) of instruction during the summer. Teachers quiz their students post Winter holiday break ( do you love how PC I made that statement?) to see how much their student has retained. Students who lose skills qualify for ESY services. And it's fun, generally set up like day camp, with plenty of opportunities for fun and outside play.
Up until now, this was something that Kelsey looked forward to. Not so much anymore. She wants to go on vacation, play with friends at the pool, and take day trips to the beach.
"Mom, my friend Genivieve doesn't go to ESY! Why do I have to go?
"Because your teacher and I think it's a good idea."
"Well, I think it's a STUPID idea!"
I've leaned to pick my battles, (for the most part.). I know when my black and white thinker is on the warpath, it's not the time to try to reason with her.
Tonight, in the van on the way to pick up my husband from work, Kelsey wanted to talk incessantly about a music video...a conversation we've had over and over. She perseverates. To break this broken record cycle, I told her that that particular subject is over.
"We're going to talk about things that make us happy."
*crickets chirping*
"OK...I'll go first. Bunny rabbits make me happy. And kittens. And puppy kisses.
You see those pretty flowered trees over there? They make me happy."
"And singing."
"Yes, Kelsey."
"You know, Mommy, I want to be a kindergarten teacher with Genivieve when I grow up."
The moment I was waiting for...
"Kelsey did you know that teachers have to go to school for a long time to become good teacher?"
"Really?"
"Yes, really. And going to ESY helps you to be a better student, which would help you be a better teacher. What do think?"
"I guess..."
What is ESY? I promise, it's not torture.
It stands for Extended School Year, and is something that many kids with ASD are eligible for, via their IEP's. It translates ( for us) into an additional month of half-days ( morning to noon) of instruction during the summer. Teachers quiz their students post Winter holiday break ( do you love how PC I made that statement?) to see how much their student has retained. Students who lose skills qualify for ESY services. And it's fun, generally set up like day camp, with plenty of opportunities for fun and outside play.
Up until now, this was something that Kelsey looked forward to. Not so much anymore. She wants to go on vacation, play with friends at the pool, and take day trips to the beach.
"Mom, my friend Genivieve doesn't go to ESY! Why do I have to go?
"Because your teacher and I think it's a good idea."
"Well, I think it's a STUPID idea!"
I've leaned to pick my battles, (for the most part.). I know when my black and white thinker is on the warpath, it's not the time to try to reason with her.
Tonight, in the van on the way to pick up my husband from work, Kelsey wanted to talk incessantly about a music video...a conversation we've had over and over. She perseverates. To break this broken record cycle, I told her that that particular subject is over.
"We're going to talk about things that make us happy."
*crickets chirping*
"OK...I'll go first. Bunny rabbits make me happy. And kittens. And puppy kisses.
You see those pretty flowered trees over there? They make me happy."
"And singing."
"Yes, Kelsey."
"You know, Mommy, I want to be a kindergarten teacher with Genivieve when I grow up."
The moment I was waiting for...
"Kelsey did you know that teachers have to go to school for a long time to become good teacher?"
"Really?"
"Yes, really. And going to ESY helps you to be a better student, which would help you be a better teacher. What do think?"
"I guess..."
Friday, March 23, 2012
Microchipped!
I was sick for most of the winter. Being a mom of four, with two on the spectrum, juggling schoolwork, freelance writing, and working on other writing projects, this was inconvenient, to say the least.
After two rounds of antibiotics, seeing an ENT specialist, a CAT scan, and bloodwork to rule out Mono and Epstein-Barr, I found myself on the receiving end of an upper endoscopy, and having a microchip stuck to my esophagus. For the next two days, I get to wear a wireless device that measures my ph levels, which will hopefully help my doctor figure out what to do with me.
My directions for the wireless system is that I have to press the appropriate button for the symptoms on the unit ( about the size of a beeper), write in the diary what times I eat or lay down, and keep the unit within three feet of me AT ALL TIMES.
If I don't, it will alarm.
It made me think of how this this technology can be used for kids with Autism.
My experience with my kids on the spectrum, is that they are FAST! I have literally turned my head for under ten seconds, and they were gone from sight. Our daughter's autistic support class has even implemented a specialized door system,effectively preventing elopement on their watch.
There simply is nothing scarier for a parent of a non-verbal child. They cannot tell someone their name, phone number, or parents' names. Non verbal kids in the spectrum cannot tell a police officer that they are lost. I have seen several stories in recent years about children with Autism Spectrum Disorders wandering off, in the middle of the night in the city, or out into swampy wildness for DAYS. Not all of these stories end with a happily ever after...
I wonder what others think about privacy issues, and even the process of insertion of a device that may make their children safer.
My chip...I don't feel it. It doesn't bother me. The only reason I know it is there, is because someone told me it is there, and I can see the ph numbers changing on the beeper like unit.
Would a cross-breed device, a "pet type chip" along with a gps wireless monitor (that alarms if your child wanders out of range) improve the quality (read:safety) for non verbal children (and even adults with ASD,or even Alzheimer's) benefit from such technology?
After two rounds of antibiotics, seeing an ENT specialist, a CAT scan, and bloodwork to rule out Mono and Epstein-Barr, I found myself on the receiving end of an upper endoscopy, and having a microchip stuck to my esophagus. For the next two days, I get to wear a wireless device that measures my ph levels, which will hopefully help my doctor figure out what to do with me.
My directions for the wireless system is that I have to press the appropriate button for the symptoms on the unit ( about the size of a beeper), write in the diary what times I eat or lay down, and keep the unit within three feet of me AT ALL TIMES.
If I don't, it will alarm.
It made me think of how this this technology can be used for kids with Autism.
My experience with my kids on the spectrum, is that they are FAST! I have literally turned my head for under ten seconds, and they were gone from sight. Our daughter's autistic support class has even implemented a specialized door system,effectively preventing elopement on their watch.
There simply is nothing scarier for a parent of a non-verbal child. They cannot tell someone their name, phone number, or parents' names. Non verbal kids in the spectrum cannot tell a police officer that they are lost. I have seen several stories in recent years about children with Autism Spectrum Disorders wandering off, in the middle of the night in the city, or out into swampy wildness for DAYS. Not all of these stories end with a happily ever after...
I wonder what others think about privacy issues, and even the process of insertion of a device that may make their children safer.
My chip...I don't feel it. It doesn't bother me. The only reason I know it is there, is because someone told me it is there, and I can see the ph numbers changing on the beeper like unit.
Would a cross-breed device, a "pet type chip" along with a gps wireless monitor (that alarms if your child wanders out of range) improve the quality (read:safety) for non verbal children (and even adults with ASD,or even Alzheimer's) benefit from such technology?
Wednesday, February 29, 2012
Universal energy
I took a yoga class last semester.
Now when a yoga article makes the news, I notice.
I read one recently, that talked about all of us having the same energy in us that had been present at the Big Bang that began our universe.
I don't know if this is true...who does? But, after losing a loved one, it's comforting to think of that person's energy still being around.
This semester, I'm fulfilling my science requirement. The first portion of the semester focused on astronomy, and the life cycle of stars.
A high mass star transitions from a nebula, essentially a "pre-star," consisting of a cloud of interstellar dust and gas, into a protostar. In maturity it becomes a main sequence star. As the main sequence uses up it's fuel, it becomes a red supergiant, before finally exploding in the form of a supernova after it's gravitational field collapses.
A supernova explosion is so powerful that it has a tendency to throw other stars in its general area, elsewhere.
Having lost friends and family, I was struck by the similarities between our stars and our loved ones:
Our loved ones are our shining stars...and once the gravitational pull of their love is gone, all of us surrounding stars do tend to scatter...find different orbits and gravitational pulls.
Recently, we suffered the loss of a dear friend. His children live in different states, and live very different lives. Without the gravitational pull of a loving father, I worry about those distances becoming permanent.
Is it kinder to let nature take it's course and leave these young star-lings to their new orbits? Or do we pull out our telescopes, radars and space stations to convey messages of love and concern and try to bring them together?
I'm never sure.
Star light, star bright,
First star I see tonight,
I wish I may, I wish I might,
Have the wish I wish tonight.
Now when a yoga article makes the news, I notice.
I read one recently, that talked about all of us having the same energy in us that had been present at the Big Bang that began our universe.
I don't know if this is true...who does? But, after losing a loved one, it's comforting to think of that person's energy still being around.
This semester, I'm fulfilling my science requirement. The first portion of the semester focused on astronomy, and the life cycle of stars.
A high mass star transitions from a nebula, essentially a "pre-star," consisting of a cloud of interstellar dust and gas, into a protostar. In maturity it becomes a main sequence star. As the main sequence uses up it's fuel, it becomes a red supergiant, before finally exploding in the form of a supernova after it's gravitational field collapses.
A supernova explosion is so powerful that it has a tendency to throw other stars in its general area, elsewhere.
Having lost friends and family, I was struck by the similarities between our stars and our loved ones:
Our loved ones are our shining stars...and once the gravitational pull of their love is gone, all of us surrounding stars do tend to scatter...find different orbits and gravitational pulls.
Recently, we suffered the loss of a dear friend. His children live in different states, and live very different lives. Without the gravitational pull of a loving father, I worry about those distances becoming permanent.
Is it kinder to let nature take it's course and leave these young star-lings to their new orbits? Or do we pull out our telescopes, radars and space stations to convey messages of love and concern and try to bring them together?
I'm never sure.
Star light, star bright,
First star I see tonight,
I wish I may, I wish I might,
Have the wish I wish tonight.
Tuesday, February 28, 2012
Catching up
it's been awhile since I've updated.
The pluses?
Kelsey is still in autistic support at our preferred school site. Due to the excellent interventions of her mainstream teacher, has friends this year! Real friends, who pass her loving notes and pictures, include her in recess activities on the playground. She began guitar club, and is learning t play acoustic! Brandon, our youngest, has joined Kelsey at her school, but in mainstream classes. A "choice" necessitated by the intention of not letting our home school principal a second crack at discrimination one of our kids. We're thrilled with the result. He's thriving there!
In the last nine months, I've completed fourteen more college credits (working on six more this semester).
The minuses?
I stayed a week at Children's Hospital of Philadelphia with my son who needed emergency surgery (necrotic and gangrenous appendicitis), nursed a mother who fell and broke her wrist, dealt with impetigo (x3) with my youngest daughter who continues to come home infected from school.
My mother in law continues to wander deeper into Alzheimerville.
We refinanced our mortgage, bought a new van (the old one putzed out on us). Payments are a challenge.
We lost a dear friend, who left us far too soon, due to cerebral hemorrhage following a massive stroke.
Life is hard, but family is worth everything. When this semester is over, I am going to sleep for a week....before painting the house.
How are things with you?
The pluses?
Kelsey is still in autistic support at our preferred school site. Due to the excellent interventions of her mainstream teacher, has friends this year! Real friends, who pass her loving notes and pictures, include her in recess activities on the playground. She began guitar club, and is learning t play acoustic! Brandon, our youngest, has joined Kelsey at her school, but in mainstream classes. A "choice" necessitated by the intention of not letting our home school principal a second crack at discrimination one of our kids. We're thrilled with the result. He's thriving there!
In the last nine months, I've completed fourteen more college credits (working on six more this semester).
The minuses?
I stayed a week at Children's Hospital of Philadelphia with my son who needed emergency surgery (necrotic and gangrenous appendicitis), nursed a mother who fell and broke her wrist, dealt with impetigo (x3) with my youngest daughter who continues to come home infected from school.
My mother in law continues to wander deeper into Alzheimerville.
We refinanced our mortgage, bought a new van (the old one putzed out on us). Payments are a challenge.
We lost a dear friend, who left us far too soon, due to cerebral hemorrhage following a massive stroke.
Life is hard, but family is worth everything. When this semester is over, I am going to sleep for a week....before painting the house.
How are things with you?
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