Poetry and Positivity (11)
Sensory Sea Shore
8/18/15
Traveling is always a challenging and exhilarating time for our kids on the spectrum. The bombardment of the senses can paralyze and exhaust any kid of any age (and their parents). This weekend I was lucky enough to have some time at the beach and great bonding time with Jake.
Friday morning, as I was laying stuck to the lumpy hotel bed, Jake came and crawled in with me. He had his game and always backs right up against me while he plays. I couldn't get back to sleep because I was really enjoying this snuggle time with my giant 12 year old... I know these days are numbered.
I started taking an inventory of what my senses were experiencing and the human body is pure poetry. The ability to experience life on so many levels is a miracle, don't take it for granted. Live, feel and experience every minute, painful, pleasurable or otherwise. Here are my hap-hazard observations.
Through groggy eyes, I can see the sky turning shades of pink, purple, orange as the sun slowly peaks through the horizon line. The patio doors were wide open. I always sleep with them that way at the beach. Salty air was blowing heavy, stained, plastic coated curtains around. The plastic rod used to draw the curtains wildly floats, striking the double paned patio doors in an uneven rhythm. One of my feet is sticking out of the over-laundered blankets and can feel the breeze. The old mildewy air conditioner kicks on every now and then, blasting freezing cold stinky air across my head and making a sound like rusted screws are rattling around inside.
I raise my head, which feels like it weighs 50lbs, to watch the sky turn more shades of violet and blazing orange and make a mental note that God is amazing and I need to live closer to a beach. Just then I feel hot breath on my neck. It doesn't smell the best, but it's better than the chlorine scented pillow case which holds a synthetic stuffed pillow and that musty air being blasted in my face.
As I turn to see the source of breath, my Super Hero with the heart of gold, slides into the bed with me from the other side. Instantly, I feel his body heat as he backs up against me. Thank goodness for the breeze, as I feel my temperature rise about 3 degrees thanks to this 12 year old human furnace.
I sink back down enjoying this time with Jake and thinking I'm the luckiest mom in the freaking world.
Suddenly the sound of trains, loud damn trains pierce the peace. Jake is watching amtrak trains on his iPod with the sound full blast, inches from my head. The train sounds are now competing with ocean waves from Jake's sound machine, real sounds of the surf hitting the sand, seagulls clicking overhead on the roof, and the erratic ticking of the curtain stick against the glass.
Jake rolls over to see my face and whispers "good morning umma, I love you". His taggy blanket (which he chews on) wet with spit, slops me across the face as he lifts one long, tanned arm to hug me around the neck. Teenage B.O. P-U! The small, silken tags are wet and stinky as they drag back across my face. "Whoop," he's back on the Amtrak.
This moment of pure parenting bliss lasted maybe :15 minutes.
My senses were overflowing, but what a blessing it is to be able to decipher and compartmentalize all this stimuli. Imagine what our kids, with heightened sensory awareness, deal with day-to-day while out in the community, at school, just living.
I can't go into what happened when I actually got out of the bed, it's way too much, I'd run out of time... think Legos and bare feet, Jake had crunchy granola bars for breakfast and we played in the sand before bed.
8/18/15
Traveling is always a challenging and exhilarating time for our kids on the spectrum. The bombardment of the senses can paralyze and exhaust any kid of any age (and their parents). This weekend I was lucky enough to have some time at the beach and great bonding time with Jake.
Friday morning, as I was laying stuck to the lumpy hotel bed, Jake came and crawled in with me. He had his game and always backs right up against me while he plays. I couldn't get back to sleep because I was really enjoying this snuggle time with my giant 12 year old... I know these days are numbered.
I started taking an inventory of what my senses were experiencing and the human body is pure poetry. The ability to experience life on so many levels is a miracle, don't take it for granted. Live, feel and experience every minute, painful, pleasurable or otherwise. Here are my hap-hazard observations.
Through groggy eyes, I can see the sky turning shades of pink, purple, orange as the sun slowly peaks through the horizon line. The patio doors were wide open. I always sleep with them that way at the beach. Salty air was blowing heavy, stained, plastic coated curtains around. The plastic rod used to draw the curtains wildly floats, striking the double paned patio doors in an uneven rhythm. One of my feet is sticking out of the over-laundered blankets and can feel the breeze. The old mildewy air conditioner kicks on every now and then, blasting freezing cold stinky air across my head and making a sound like rusted screws are rattling around inside.
I raise my head, which feels like it weighs 50lbs, to watch the sky turn more shades of violet and blazing orange and make a mental note that God is amazing and I need to live closer to a beach. Just then I feel hot breath on my neck. It doesn't smell the best, but it's better than the chlorine scented pillow case which holds a synthetic stuffed pillow and that musty air being blasted in my face.
As I turn to see the source of breath, my Super Hero with the heart of gold, slides into the bed with me from the other side. Instantly, I feel his body heat as he backs up against me. Thank goodness for the breeze, as I feel my temperature rise about 3 degrees thanks to this 12 year old human furnace.
I sink back down enjoying this time with Jake and thinking I'm the luckiest mom in the freaking world.
Suddenly the sound of trains, loud damn trains pierce the peace. Jake is watching amtrak trains on his iPod with the sound full blast, inches from my head. The train sounds are now competing with ocean waves from Jake's sound machine, real sounds of the surf hitting the sand, seagulls clicking overhead on the roof, and the erratic ticking of the curtain stick against the glass.
Jake rolls over to see my face and whispers "good morning umma, I love you". His taggy blanket (which he chews on) wet with spit, slops me across the face as he lifts one long, tanned arm to hug me around the neck. Teenage B.O. P-U! The small, silken tags are wet and stinky as they drag back across my face. "Whoop," he's back on the Amtrak.
This moment of pure parenting bliss lasted maybe :15 minutes.
My senses were overflowing, but what a blessing it is to be able to decipher and compartmentalize all this stimuli. Imagine what our kids, with heightened sensory awareness, deal with day-to-day while out in the community, at school, just living.
I can't go into what happened when I actually got out of the bed, it's way too much, I'd run out of time... think Legos and bare feet, Jake had crunchy granola bars for breakfast and we played in the sand before bed.
Reflections
2/20/15
My pastor says "Mary was the first special needs mother!"... at first I scoffed, but the more I think about it... I'll take that and strive forward!
There is a mom whom I adore,
Lately I call her more and more.
She had a son, her only One,
To many He is second to none.
Born by surprise He was to be,
The One that many strive to see.
As He grew, stories became true,
His love for others grew and grew.
But with His gifts, He was alone,
Not understood when His love shone.
He made friends quickly but many betray,
They didn’t believe what He had to say.
Proving His gifts day in and out,
Performing miracles while some still doubt.
His mom stood firm, believing in her Son,
Angered by those hurting her only One.
Her heart would break as those would jeer,
Understanding not why others sneer.
He gave great love, she taught Him well,
But in the end, the story she’d tell.
This mom is Mary, her Son born in a stable,
A gifted child was handy and able.
She saw Him die and many still follow,
But in the tears, a world would wallow.
When you’re feeling alone and no one understands,
Remember the gift with nails in His hands.
His mom parented a gifted Son,
Struggled, alone, for us it was done.
2/20/15
My pastor says "Mary was the first special needs mother!"... at first I scoffed, but the more I think about it... I'll take that and strive forward!
There is a mom whom I adore,
Lately I call her more and more.
She had a son, her only One,
To many He is second to none.
Born by surprise He was to be,
The One that many strive to see.
As He grew, stories became true,
His love for others grew and grew.
But with His gifts, He was alone,
Not understood when His love shone.
He made friends quickly but many betray,
They didn’t believe what He had to say.
Proving His gifts day in and out,
Performing miracles while some still doubt.
His mom stood firm, believing in her Son,
Angered by those hurting her only One.
Her heart would break as those would jeer,
Understanding not why others sneer.
He gave great love, she taught Him well,
But in the end, the story she’d tell.
This mom is Mary, her Son born in a stable,
A gifted child was handy and able.
She saw Him die and many still follow,
But in the tears, a world would wallow.
When you’re feeling alone and no one understands,
Remember the gift with nails in His hands.
His mom parented a gifted Son,
Struggled, alone, for us it was done.
Animating Hope
11/21/14
This week for the first time in history the Vatican held a Conference on Autism. “The Person with Autism Spectrum Disorders: Animating Hope.”
Being Catholic, mom of an ASD kiddo, (one who has church hopped in search of acceptance and understanding), I am beyond thrilled that more than 650 experts from 57 countries will be focused on our kids, their faith and their futures. Not only does this bring the spotlight to the struggles of millions of families world-wide but it shines a light on the need for spirituality among our spectrum members.
Many think religion is too abstract for those with autism; if you can’t touch it, see it, smell it, that it’s not possible for our black/white thinkers, but that’s just not true. In fact the opposite is truth. Just as Jake can consume and feel the stress in a room, he can also feel the presence of spirit and calmness in his heart and home. He can feel God around him and is eager to hear His message.
Animate Hope is a divine title since many days we can feel totally hopeless. While I strive to focus forward on the positive, those negative demons still penetrate my consciousness now and then. They are strong and hang on tight, only to be doused by faith.
Hope: An optimistic attitude of mind based on an expectation of positive outcomes…
+
Animate: Bring to life.
=
Bringing expectant optimism to life!
Animate Hope (meditations)
Animate my eyes to fully see the world they see it.
Animate my ears to clearly hear what they hear, especially God’s voice.
Animate my heart to accept those that just don’t understand and give me strength to patiently educate them.
Animate my soul to keep fighting for that acceptance.
Animate all families to find strength in God to keep moving forward.
Animate my voice to lovingly and respectfully speak for the voiceless.
Animate my joy.
We hope that God’s love will stir within and emanate from us.
We hope that society (as a whole) will feel moved to truly accept and love folks living on the spectrum.
We hope and expect that our son will have a fulfilled, loving and satisfying future.
We hope that Jake will always feel “God in his heart” and know that he is loved.
We hope that we will have the strength to educate and guide others to spirituality on the spectrum.
We hope others accept our ASD family, around the world, as they are, perfectly and purposefully made, by God’s hands.
11/21/14
This week for the first time in history the Vatican held a Conference on Autism. “The Person with Autism Spectrum Disorders: Animating Hope.”
Being Catholic, mom of an ASD kiddo, (one who has church hopped in search of acceptance and understanding), I am beyond thrilled that more than 650 experts from 57 countries will be focused on our kids, their faith and their futures. Not only does this bring the spotlight to the struggles of millions of families world-wide but it shines a light on the need for spirituality among our spectrum members.
Many think religion is too abstract for those with autism; if you can’t touch it, see it, smell it, that it’s not possible for our black/white thinkers, but that’s just not true. In fact the opposite is truth. Just as Jake can consume and feel the stress in a room, he can also feel the presence of spirit and calmness in his heart and home. He can feel God around him and is eager to hear His message.
Animate Hope is a divine title since many days we can feel totally hopeless. While I strive to focus forward on the positive, those negative demons still penetrate my consciousness now and then. They are strong and hang on tight, only to be doused by faith.
Hope: An optimistic attitude of mind based on an expectation of positive outcomes…
+
Animate: Bring to life.
=
Bringing expectant optimism to life!
Animate Hope (meditations)
Animate my eyes to fully see the world they see it.
Animate my ears to clearly hear what they hear, especially God’s voice.
Animate my heart to accept those that just don’t understand and give me strength to patiently educate them.
Animate my soul to keep fighting for that acceptance.
Animate all families to find strength in God to keep moving forward.
Animate my voice to lovingly and respectfully speak for the voiceless.
Animate my joy.
We hope that God’s love will stir within and emanate from us.
We hope that society (as a whole) will feel moved to truly accept and love folks living on the spectrum.
We hope and expect that our son will have a fulfilled, loving and satisfying future.
We hope that Jake will always feel “God in his heart” and know that he is loved.
We hope that we will have the strength to educate and guide others to spirituality on the spectrum.
We hope others accept our ASD family, around the world, as they are, perfectly and purposefully made, by God’s hands.
Baptism Blessings
7/5/14
I was recently honored to help with a lovely family
as three children were baptized. The family has had a
hard time being accepted in church, as many don't
understand the activity of a small ASD kid in church.
Believe it or not, there is still judgement in church and it hurts. But it only takes one pure heart, to renew wavering hope.
This poem is proof that not every child has to fit the church-ready mold. Fr. George went above and beyond to bring the sacraments to these children at the place they are, at this point in time. No expectations, no judgement, no big mass and no stress.
Way to go Fr. George and Congrats to Maria and kids!
A tired mom and helpful aide,
To the church, their way, they made.
Three lively children all in tow,
A holy place they all would go.
Dressed in white, two girls one boy,
Eagerly seeking that special joy.
Full of energy and on the go,
Receive the spirit to help them grow.
One by one, Sasha was first
To feel the holy water burst!
Submerged hands, bubbles abound,
Blessings from God, she had found.
Natalie, second, was not quite sure.
A careful walk to water for her.
A sprinkle here, One, Two, Three.
The holy spirit set her free.
Next was Jason, what a guy.
Full of energy and not too shy.
All dressed in white, the last one dry.
Blessings here, please don't cry!
His turn last, his hands submerge
To splash us all, was his urge.
Fr. George sprinkles over head
All three kids baptized, for treats, they fled.
Mom was happy though filled with worry,
As out the door one dashed in a hurry!
Turn the locks, oh he’s too smart…
Down the hall, he would dart.
High heels, sandals and skirts a fly
As grown-ups run to catch that guy.
Food is needed, cupcakes first,
Potatoes, salad and juice for thirst.
Support from moms filled all eyes,
“How does she do it? I would cry!”
Ideas abound on how to help,
as filling bellies quiets all yelps!
Now, Fr. George is on his way
Sweet goodbyes all must say.
But Nativity's Ms.Tracey is super great,
These Super Hero kids will grow in faith.
Congratulations to all. Again, proof of what a kind heart and love can accomplish! So happy for these kids.
7/5/14
I was recently honored to help with a lovely family
as three children were baptized. The family has had a
hard time being accepted in church, as many don't
understand the activity of a small ASD kid in church.
Believe it or not, there is still judgement in church and it hurts. But it only takes one pure heart, to renew wavering hope.
This poem is proof that not every child has to fit the church-ready mold. Fr. George went above and beyond to bring the sacraments to these children at the place they are, at this point in time. No expectations, no judgement, no big mass and no stress.
Way to go Fr. George and Congrats to Maria and kids!
A tired mom and helpful aide,
To the church, their way, they made.
Three lively children all in tow,
A holy place they all would go.
Dressed in white, two girls one boy,
Eagerly seeking that special joy.
Full of energy and on the go,
Receive the spirit to help them grow.
One by one, Sasha was first
To feel the holy water burst!
Submerged hands, bubbles abound,
Blessings from God, she had found.
Natalie, second, was not quite sure.
A careful walk to water for her.
A sprinkle here, One, Two, Three.
The holy spirit set her free.
Next was Jason, what a guy.
Full of energy and not too shy.
All dressed in white, the last one dry.
Blessings here, please don't cry!
His turn last, his hands submerge
To splash us all, was his urge.
Fr. George sprinkles over head
All three kids baptized, for treats, they fled.
Mom was happy though filled with worry,
As out the door one dashed in a hurry!
Turn the locks, oh he’s too smart…
Down the hall, he would dart.
High heels, sandals and skirts a fly
As grown-ups run to catch that guy.
Food is needed, cupcakes first,
Potatoes, salad and juice for thirst.
Support from moms filled all eyes,
“How does she do it? I would cry!”
Ideas abound on how to help,
as filling bellies quiets all yelps!
Now, Fr. George is on his way
Sweet goodbyes all must say.
But Nativity's Ms.Tracey is super great,
These Super Hero kids will grow in faith.
Congratulations to all. Again, proof of what a kind heart and love can accomplish! So happy for these kids.
Haiku of Jake's Life
5/9/14
Zero -1
Bless with a baby
Future brighter than ever
Exhaustion rules all
1-2
Running pushing ahhh
Fevers infections rule, tubes
Few words many smiles
2-3
Personality
Craving the sensory rush
Constant spinning lids
3-4
Preschool discovers
Abundant testing tears shed
Autism spectrum
4-5
Poopy painting wall
Tempers flare aggression hurts
Searching for God here
5-6
Need to control days
Sleep necessary always
Seeking positive
6-7
Ignore behavior
Feeling hope through acceptance
Learning together
7-8
First grade fights desks fly
Nails chewed off every day blood
Will it be ok?
8-9
Adventurous life
Confident french-fry loving
School struggles broaden
9-10
Glass breaking at school
Ambulance ride to ER
Private placement ah
10-11
Feeling a warm hug
Relationships deepening
Spiritual love
5/9/14
Zero -1
Bless with a baby
Future brighter than ever
Exhaustion rules all
1-2
Running pushing ahhh
Fevers infections rule, tubes
Few words many smiles
2-3
Personality
Craving the sensory rush
Constant spinning lids
3-4
Preschool discovers
Abundant testing tears shed
Autism spectrum
4-5
Poopy painting wall
Tempers flare aggression hurts
Searching for God here
5-6
Need to control days
Sleep necessary always
Seeking positive
6-7
Ignore behavior
Feeling hope through acceptance
Learning together
7-8
First grade fights desks fly
Nails chewed off every day blood
Will it be ok?
8-9
Adventurous life
Confident french-fry loving
School struggles broaden
9-10
Glass breaking at school
Ambulance ride to ER
Private placement ah
10-11
Feeling a warm hug
Relationships deepening
Spiritual love
Autism by MY Numbers
April 2014
OK Friends...
Today was a rough day, for those sharing the ASD fish bowl. The reality of a 30% increase in ASD cases is scary and yet another rude, wake-up call.
We must keep educating our kids and each other. We have to come together to share ideas, best practices and build each other up. We must fight for our children and stop fighting each other.
The facts for me are this though: I am not a scientist. I will support those doing research always and hope my donated dollars prove fruitful, but I know and trust that thousands of curious and qualified researchers are dissecting zillions of cells to find a cure or cause for the rise in autism and for that I am thankful.
I understand it’s important, I get this is an epidemic, but I cannot live filled with anger or fear. I cannot spend my limited energy being mad at the government and lack of services provided or not being provided my family. I need to be around a long time and stress kills. I have to live in hope of one amazing future for my child and work towards that goal.
The issue at hand for me, and my primary focus of this piece is to share another way to look at the numbers that impact our daily lives. Call me nutty, call me rosy glassed, call me what you want, I don’t really care. What I want to do is provide a lighter look at the real side of autism and lift those up who are feeling low. That’s the one thing I can control. It’s all I know so here are MY autism numbers.
1.2 million kids under age 21 have some sort of ASD diagnosis. That equates to nearly 3 million very tired parents. (I think)
Thousands of dollars spent on diapers, outlet covers, baby gates, no-spill cups, shoe laces that suck, chewing gum, fidget toys, weighted blankets and chew sticks, forever!
365 prayers for patience, strength and guidance this year, last year and the next, forever.
88 black and white keys for Jake to tickle on the piano.
1 cup of cereal and 1 apple cut exactly the same way for breakfast every day.
Zero times I refuse Family Snuggle Time.
5:55 am is the wake up time – 5:55pm we start the downward spiral.
Countless tears shed.
50+ photos taken by Jake that are good enough to publish.
2 Cans of Diet Coke I can slam if I’m desperate.
70 or so really cool Super Hero moms I have the honor know.
35 mph is the average happy speed we ride on our bikes.
92x’s I’ve been asked about our attic and the lightbulb.
1 big bottle of wine can be consumed by each Super Hero mom after and before an IEP meeting.
BTW: the IEP is 42 pages long!
2 books read to Jake every night of his life.
10 fingers missing nails, 10 toes where they are too long, because cutting 20 toenails in one sitting grosses me out.
30 oz of liquid soap used/wasted per shower, without fail.
4 friends I can really trust. Did you see that? 4!!
6 supremely acute senses that don’t miss a thing!
8 teeth left to get loose, incite panic and be pulled out.
3 glasses of wine and a good order of Coco Shrimp before I fall asleep and forget about everything.
2x’s a month we shave his head.
9 kids in Jake’s class is about his limit.
24 books on my shelf about special needs.
4 months until he's taller than daddio!
3/2012 the month our lives changed when we won private placement.
9 Initials labeling my Super Hero. (ASD, ADHD, possible MD)(for now).
3 miles we try to walk every warm morning in 45 minutes.
Every single person Jake meets will never forget him!
60 minutes is our limit in church before major irritation sets in.
11 is the size of his ridiculously huge feet at 11 years old.
2 verbal prompts for each task if I really want it done.
4 pills and 3 supplements in the morning.
2 pills and 1 supplement in the evening.
24 times I can be called naughty names by Jake before I can't hide my laughter any more.
100 miles round trip driven to each behaviorist appointment for years.
14 months old was the age we got tubes in our ears.
9 months was the age we started running. (we haven’t stopped).
Every time is how often we need to listen to our kids and pay attention to their behaviors. They are here to teach us and we are their students. With numbers reaching into the millions, just think of how many people will understand more about Autism when our kids reach the real working world.
It doesn’t mean they will be accepted or not made fun of, but it does mean more people will get a chance to love (and hopefully understand) our kids like we do.
One God.
One prayer.
One faith.
One unbelievably awesome and doubly blessed Super Hero.
April 2014
OK Friends...
Today was a rough day, for those sharing the ASD fish bowl. The reality of a 30% increase in ASD cases is scary and yet another rude, wake-up call.
We must keep educating our kids and each other. We have to come together to share ideas, best practices and build each other up. We must fight for our children and stop fighting each other.
The facts for me are this though: I am not a scientist. I will support those doing research always and hope my donated dollars prove fruitful, but I know and trust that thousands of curious and qualified researchers are dissecting zillions of cells to find a cure or cause for the rise in autism and for that I am thankful.
I understand it’s important, I get this is an epidemic, but I cannot live filled with anger or fear. I cannot spend my limited energy being mad at the government and lack of services provided or not being provided my family. I need to be around a long time and stress kills. I have to live in hope of one amazing future for my child and work towards that goal.
The issue at hand for me, and my primary focus of this piece is to share another way to look at the numbers that impact our daily lives. Call me nutty, call me rosy glassed, call me what you want, I don’t really care. What I want to do is provide a lighter look at the real side of autism and lift those up who are feeling low. That’s the one thing I can control. It’s all I know so here are MY autism numbers.
1.2 million kids under age 21 have some sort of ASD diagnosis. That equates to nearly 3 million very tired parents. (I think)
Thousands of dollars spent on diapers, outlet covers, baby gates, no-spill cups, shoe laces that suck, chewing gum, fidget toys, weighted blankets and chew sticks, forever!
365 prayers for patience, strength and guidance this year, last year and the next, forever.
88 black and white keys for Jake to tickle on the piano.
1 cup of cereal and 1 apple cut exactly the same way for breakfast every day.
Zero times I refuse Family Snuggle Time.
5:55 am is the wake up time – 5:55pm we start the downward spiral.
Countless tears shed.
50+ photos taken by Jake that are good enough to publish.
2 Cans of Diet Coke I can slam if I’m desperate.
70 or so really cool Super Hero moms I have the honor know.
35 mph is the average happy speed we ride on our bikes.
92x’s I’ve been asked about our attic and the lightbulb.
1 big bottle of wine can be consumed by each Super Hero mom after and before an IEP meeting.
BTW: the IEP is 42 pages long!
2 books read to Jake every night of his life.
10 fingers missing nails, 10 toes where they are too long, because cutting 20 toenails in one sitting grosses me out.
30 oz of liquid soap used/wasted per shower, without fail.
4 friends I can really trust. Did you see that? 4!!
6 supremely acute senses that don’t miss a thing!
8 teeth left to get loose, incite panic and be pulled out.
3 glasses of wine and a good order of Coco Shrimp before I fall asleep and forget about everything.
2x’s a month we shave his head.
9 kids in Jake’s class is about his limit.
24 books on my shelf about special needs.
4 months until he's taller than daddio!
3/2012 the month our lives changed when we won private placement.
9 Initials labeling my Super Hero. (ASD, ADHD, possible MD)(for now).
3 miles we try to walk every warm morning in 45 minutes.
Every single person Jake meets will never forget him!
60 minutes is our limit in church before major irritation sets in.
11 is the size of his ridiculously huge feet at 11 years old.
2 verbal prompts for each task if I really want it done.
4 pills and 3 supplements in the morning.
2 pills and 1 supplement in the evening.
24 times I can be called naughty names by Jake before I can't hide my laughter any more.
100 miles round trip driven to each behaviorist appointment for years.
14 months old was the age we got tubes in our ears.
9 months was the age we started running. (we haven’t stopped).
Every time is how often we need to listen to our kids and pay attention to their behaviors. They are here to teach us and we are their students. With numbers reaching into the millions, just think of how many people will understand more about Autism when our kids reach the real working world.
It doesn’t mean they will be accepted or not made fun of, but it does mean more people will get a chance to love (and hopefully understand) our kids like we do.
One God.
One prayer.
One faith.
One unbelievably awesome and doubly blessed Super Hero.
Regression Sucks
7/19/13
This was written to honor my dear friend. At some point in all our lives, we watch our babies slip away, whether it be in the beginning when their lose their voice or near puberty when they lose their "cool".
We see them lose skills, regress and disappear for a time. If you're like me, if your baby's hurting (no matter what the age) our hearts slowly break.
I was trying to take a nap this afternoon, but every time I shut my eyes, the first 4 phrases of this poem popped in my head and I had to write.
I didn't know who it would be for until it was complete, but now the message is clear.
This is divinely written for Anne.
It comes in waves at any age, and robs our beautiful kids away.
Sneaking in like a thief to steal a voice, the parents search for hidden choice.
Desperate for help our hearts cry out, as we watch our children; SHOUT!!
Stealing his smile or fleeting glance, this surely cannot be happenstance.
Who has done this to my perfect boy? Playing with lives as if a toy.
It’s not my fault but anger boils, and sends many a family into toils.
Are shots to blame? Our blood’s the same, this can’t be happening, this awful game.
We climb up from the dark each day, hoping to connect with my baby “the old way”.
He used to, when he was young, we’d play and share, but now he’s gone.
Seeking answers, some parents cave, when the kids need them to be brave.
What have I done? What can we do? Never stop fighting, he’s depending on you.
Hold your head up to see the sky, the road is rough and need to cry.
This too shall pass and your life will be back, just weather this storm for magnificent Max.
It may last a year, we’ll all share your fear, never forget that we are here!
Love you A!
7/19/13
This was written to honor my dear friend. At some point in all our lives, we watch our babies slip away, whether it be in the beginning when their lose their voice or near puberty when they lose their "cool".
We see them lose skills, regress and disappear for a time. If you're like me, if your baby's hurting (no matter what the age) our hearts slowly break.
I was trying to take a nap this afternoon, but every time I shut my eyes, the first 4 phrases of this poem popped in my head and I had to write.
I didn't know who it would be for until it was complete, but now the message is clear.
This is divinely written for Anne.
It comes in waves at any age, and robs our beautiful kids away.
Sneaking in like a thief to steal a voice, the parents search for hidden choice.
Desperate for help our hearts cry out, as we watch our children; SHOUT!!
Stealing his smile or fleeting glance, this surely cannot be happenstance.
Who has done this to my perfect boy? Playing with lives as if a toy.
It’s not my fault but anger boils, and sends many a family into toils.
Are shots to blame? Our blood’s the same, this can’t be happening, this awful game.
We climb up from the dark each day, hoping to connect with my baby “the old way”.
He used to, when he was young, we’d play and share, but now he’s gone.
Seeking answers, some parents cave, when the kids need them to be brave.
What have I done? What can we do? Never stop fighting, he’s depending on you.
Hold your head up to see the sky, the road is rough and need to cry.
This too shall pass and your life will be back, just weather this storm for magnificent Max.
It may last a year, we’ll all share your fear, never forget that we are here!
Love you A!
----------------------------------------------
The Table in the Back
May 7, 2013
We all need them to get through life. Someone who will support us when we’re unsure, build us up when we’re stuck in the trenches and reassure us things will get better. Not perfect parents, not super siblings, but imperfect friends just a few steps ahead of us on the spectrum highway. Those willing to share their tricks and warn us of what’s around the next bend.
Granted, no two of our kids are alike, but none of the parents are either. I became a member of a small group of reluctantly rowdy girls this year, all moms of spectrum kiddos in our school. We all are married, have hobbies/jobs and lots to do, but all know the depths of loneliness and struggle.
We’ve all been dumped by one play-group or another, one school or another and one church or another and many friends. We’ve all felt the depletion after receiving “those” looks, wanted to smack complete strangers and celebrated NT behavior in public. We all struggle with our quirky-control-freak-it-better-be-my-way-kiddos and adore the teachers who are trying to guide our families to success.
All facing similar life challenges while cut from very different cloth.
So every two weeks we meet to catch each other up on life, love, fisticuffs and failures. It’s comfortable, casual, and cheeky. We are all as strange as our kids, yet somehow we seem to blend our strengths and build each other up.
Today was one of those meetings where I wasn’t the strong one. I needed the lift and it was heartily provided by the ladies from KKS-MCC. So here’s a little tribute to them. CP, AS, DJ, VL, LT!
The Table in the Back
No judgement, no fears, just love and tears.
The people that feel you, that need you, and share your fears.
Those who rejoice with you.
Those who share a voice with you.
They sigh along and shake their heads, when you share the thing that “someone said.”
Gasp aloud and cry along-side as you retell your latest dread.
We laugh so loud we fear eviction from the fancy french diner with our favorite confections.
We’ve screamed and clapped; talked poop, sex and slaps.
Though we all just met, we’re the best of chaps.
I cherish the time ladies, when we let our guard down.
How you all handle life makes me so proud.
I do believe I have the youngest kid in the group.
But I am so thrilled to be part of this troupe.
I’m learning from you how to stay calm and cool.
Eventhough I fully realize sometimes I’m the fool.
So thank you my friends, let’s keep each other on track.
As we “rip it up” at the table in the back.
------------------------------------------------------
Million Dollar Question
September 27, 2011
It’s the ‘WH’ word we waited 6 years for Jake to utter; now it’s the most dreaded word of my vocabulary! If I NEVER hear it again, I'll be ecstatic!
Why is he acting out this way?
Why is this year different?
Why can't he be redirected without a tantrum anymore?
Why are his academics awesome, but his behavior awful?
Why is he growing so darn fast?
Why are his meds NOT working?
(just answered those two questions)
Why can he build perfect miniature elevators with cables, opening doors and floors, yet stacks blocks with the smallest ones on the bottom?
Why can’t he keep it together at school?
Why won’t he eat that food that he used to love last week, unless it's swimming in butter?
Why won’t he pet the dog without frantically washing his hands afterwards?
Why do all the stripes on his comforter have to be perfectly symmetrical and straight before he gets in, but are ok to be messed up once inside?
Why does he seem to be mis-behaving his way right out of public school?
Why won’t he eat a sandwich if cheese hangs outside of the bread?
Why does he brush his teeth with an electric toothbrush that he never turns on?
Why does he use toilet paper and leave the mess still hanging on the roll? (would love an answer for this one!)
Why has he gone back to hiding transitional stuffed animals in his backpack for the bus ride?
Why can he shake 100 hands during the ‘kiss of peace’ at church but struggle to look someone he loves in the eye?
Why on earth is he watching Wow Wow Wubbzy, again?
Why does he answer a question with the question, “… or what will happen?”
Why can his brain memorize any and all visual images he sees, but be unable to visualize 2 + 1 without fingers?
Why can he sing me a song (verbatim) he heard on the radio 4 hours ago, but forget what I asked him to do 4 seconds ago?
Why can he explain his inability to control himself on the playground to his teacher, yet can’t answer a “why” question?
Why can he give me turn-by-turn directions to Union Station in downtown DC but not remember 3 step instructions unless I sing them?
Why can’t he ‘eat inside’ restaurants anymore, he used to love it?
Why, Why, Why can’t this year be just a little bit easier?
If I had any one of these answers, I’d be touring the country getting paid lots of money for lecturing!
So please, just don’t ask me WHY….. give me a solution!!!
P.S. Why do you think Jake went to bed calling me a “Poopy, Jerk, Fool, Mean Mommy”?
------------------------------------------------------
No Wiser Words Written
September 5, 2011
I don't want to make a habit of doing this, but I want this blog to lift people as much as possible. I read this story on another Autism website I follow and it struck me to the core. It answers the big question we all face when raising Super Heroes or extra challenging children... Why? and Why our family?
Thanks Maryann for posting this and thanks Erma Bombeck for your brilliance. Sorry mom you'll probably cry... again. :)
The Special Mother
by Erma Bombeck
Did you ever wonder how mothers of disabled children were chosen?
Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"This one gets a daughter. The Patron saint will be Cecelia"
... "This one gets twins. The Patron saint will be Matthew"
"This one gets a son. The Patron saint.....give her Gerard. He's used to profanity"
Finally He passes a name to an angel and smiles. "Give her a disabled child".
The angel is curious. "Why this one God? She's so happy"
"Exactly," smiles God. "Could I give a disabled child to a mother who does not know laughter? That would be cruel!"
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of sorrow and despair. Once the shock and resentment wears off, she'll handle it. I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."
"But Lord, I don't think she even believes in you"
God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness"
The angel gasps - "Selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally she won't survive. Yes here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider any 'step' ordinary. When her child says "Momma" for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see...ignorance, cruelty and prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side"
"And what about her Patron saint?" asks the angel, his pen poised in mid air.
God smiles "A mirror will suffice".
-------------------------------------------
The Rhythm of Life
Saturday, October 29, 2011
Living on the edge with barely a break,
Is how we exist with our hero named Jake.
Life as we know it, never slows down,
But if we go fast there’s rarely a frown.
From doctor to doctor we constantly trudge,
Looking for help while O-D’ing on fudge.
A doctor for play, a doctor for pills,
Shots, glue and growth charts, “Ugh, all the bills!”
As Jake continues to grow, a day doesn’t go by
That we don’t marvel to others, “Look at our guy.”
Overcoming huge hurdles just trying to make friends,
The challenges mount; frustration won't end.
A burst, a scream and an ambulance ride,
My body was aching as I stood by his side.
Our hero is torn, just trapped in his skin,
Begging and praying just to ‘fit in.’
The future road warns big changes ahead,
New schools, new friends and “I want my bed!”
As we forge this new path, please keep on calling,
It’s easy for me to feel like I’m falling.
Come to my door with wine bottles in hand,
We can do this together, if you all help me stand!
The Table in the Back
May 7, 2013
We all need them to get through life. Someone who will support us when we’re unsure, build us up when we’re stuck in the trenches and reassure us things will get better. Not perfect parents, not super siblings, but imperfect friends just a few steps ahead of us on the spectrum highway. Those willing to share their tricks and warn us of what’s around the next bend.
Granted, no two of our kids are alike, but none of the parents are either. I became a member of a small group of reluctantly rowdy girls this year, all moms of spectrum kiddos in our school. We all are married, have hobbies/jobs and lots to do, but all know the depths of loneliness and struggle.
We’ve all been dumped by one play-group or another, one school or another and one church or another and many friends. We’ve all felt the depletion after receiving “those” looks, wanted to smack complete strangers and celebrated NT behavior in public. We all struggle with our quirky-control-freak-it-better-be-my-way-kiddos and adore the teachers who are trying to guide our families to success.
All facing similar life challenges while cut from very different cloth.
So every two weeks we meet to catch each other up on life, love, fisticuffs and failures. It’s comfortable, casual, and cheeky. We are all as strange as our kids, yet somehow we seem to blend our strengths and build each other up.
Today was one of those meetings where I wasn’t the strong one. I needed the lift and it was heartily provided by the ladies from KKS-MCC. So here’s a little tribute to them. CP, AS, DJ, VL, LT!
The Table in the Back
No judgement, no fears, just love and tears.
The people that feel you, that need you, and share your fears.
Those who rejoice with you.
Those who share a voice with you.
They sigh along and shake their heads, when you share the thing that “someone said.”
Gasp aloud and cry along-side as you retell your latest dread.
We laugh so loud we fear eviction from the fancy french diner with our favorite confections.
We’ve screamed and clapped; talked poop, sex and slaps.
Though we all just met, we’re the best of chaps.
I cherish the time ladies, when we let our guard down.
How you all handle life makes me so proud.
I do believe I have the youngest kid in the group.
But I am so thrilled to be part of this troupe.
I’m learning from you how to stay calm and cool.
Eventhough I fully realize sometimes I’m the fool.
So thank you my friends, let’s keep each other on track.
As we “rip it up” at the table in the back.
------------------------------------------------------
Million Dollar Question
September 27, 2011
It’s the ‘WH’ word we waited 6 years for Jake to utter; now it’s the most dreaded word of my vocabulary! If I NEVER hear it again, I'll be ecstatic!
Why is he acting out this way?
Why is this year different?
Why can't he be redirected without a tantrum anymore?
Why are his academics awesome, but his behavior awful?
Why is he growing so darn fast?
Why are his meds NOT working?
(just answered those two questions)
Why can he build perfect miniature elevators with cables, opening doors and floors, yet stacks blocks with the smallest ones on the bottom?
Why can’t he keep it together at school?
Why won’t he eat that food that he used to love last week, unless it's swimming in butter?
Why won’t he pet the dog without frantically washing his hands afterwards?
Why do all the stripes on his comforter have to be perfectly symmetrical and straight before he gets in, but are ok to be messed up once inside?
Why does he seem to be mis-behaving his way right out of public school?
Why won’t he eat a sandwich if cheese hangs outside of the bread?
Why does he brush his teeth with an electric toothbrush that he never turns on?
Why does he use toilet paper and leave the mess still hanging on the roll? (would love an answer for this one!)
Why has he gone back to hiding transitional stuffed animals in his backpack for the bus ride?
Why can he shake 100 hands during the ‘kiss of peace’ at church but struggle to look someone he loves in the eye?
Why on earth is he watching Wow Wow Wubbzy, again?
Why does he answer a question with the question, “… or what will happen?”
Why can his brain memorize any and all visual images he sees, but be unable to visualize 2 + 1 without fingers?
Why can he sing me a song (verbatim) he heard on the radio 4 hours ago, but forget what I asked him to do 4 seconds ago?
Why can he explain his inability to control himself on the playground to his teacher, yet can’t answer a “why” question?
Why can he give me turn-by-turn directions to Union Station in downtown DC but not remember 3 step instructions unless I sing them?
Why can’t he ‘eat inside’ restaurants anymore, he used to love it?
Why, Why, Why can’t this year be just a little bit easier?
If I had any one of these answers, I’d be touring the country getting paid lots of money for lecturing!
So please, just don’t ask me WHY….. give me a solution!!!
P.S. Why do you think Jake went to bed calling me a “Poopy, Jerk, Fool, Mean Mommy”?
------------------------------------------------------
No Wiser Words Written
September 5, 2011
I don't want to make a habit of doing this, but I want this blog to lift people as much as possible. I read this story on another Autism website I follow and it struck me to the core. It answers the big question we all face when raising Super Heroes or extra challenging children... Why? and Why our family?
Thanks Maryann for posting this and thanks Erma Bombeck for your brilliance. Sorry mom you'll probably cry... again. :)
The Special Mother
by Erma Bombeck
Did you ever wonder how mothers of disabled children were chosen?
Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"This one gets a daughter. The Patron saint will be Cecelia"
... "This one gets twins. The Patron saint will be Matthew"
"This one gets a son. The Patron saint.....give her Gerard. He's used to profanity"
Finally He passes a name to an angel and smiles. "Give her a disabled child".
The angel is curious. "Why this one God? She's so happy"
"Exactly," smiles God. "Could I give a disabled child to a mother who does not know laughter? That would be cruel!"
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of sorrow and despair. Once the shock and resentment wears off, she'll handle it. I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."
"But Lord, I don't think she even believes in you"
God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness"
The angel gasps - "Selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally she won't survive. Yes here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider any 'step' ordinary. When her child says "Momma" for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see...ignorance, cruelty and prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side"
"And what about her Patron saint?" asks the angel, his pen poised in mid air.
God smiles "A mirror will suffice".
-------------------------------------------
The Rhythm of Life
Saturday, October 29, 2011
Living on the edge with barely a break,
Is how we exist with our hero named Jake.
Life as we know it, never slows down,
But if we go fast there’s rarely a frown.
From doctor to doctor we constantly trudge,
Looking for help while O-D’ing on fudge.
A doctor for play, a doctor for pills,
Shots, glue and growth charts, “Ugh, all the bills!”
As Jake continues to grow, a day doesn’t go by
That we don’t marvel to others, “Look at our guy.”
Overcoming huge hurdles just trying to make friends,
The challenges mount; frustration won't end.
A burst, a scream and an ambulance ride,
My body was aching as I stood by his side.
Our hero is torn, just trapped in his skin,
Begging and praying just to ‘fit in.’
The future road warns big changes ahead,
New schools, new friends and “I want my bed!”
As we forge this new path, please keep on calling,
It’s easy for me to feel like I’m falling.
Come to my door with wine bottles in hand,
We can do this together, if you all help me stand!
Ode to Dr. Seuss
Saturday, March 3, 2012
Today I feel small, though I’m really quite tall.
Hangin’ with Jake reminds me of it all.
Some days I can plan and handle this load,
Others I survive; two wheels on the road.
Disabled or not, he strives to fit in.
Playing and mimicking kids on a whim.
When we laugh, I just marvel at how his brain works,
Jake searches for words, but out come blunt hurts.
For the first time this spring, Jake met friends in the ‘hood.
They race and they chase and were really doing good.
So excited with glee he knows not what to say,
He starts calling names and then scoots away.
Girls get upset and tell me of these tales,
“He called me an elephant with big hairy scales!”
Correcting and teaching this job never ends,
We apologize and struggle to keep our new friends.
“I’m sorry I called you a name,” he yells up the tree,
The friend takes it in and swings down on one knee.
I cover for Jake and say “I’m an elephant too,
Trust me I hear it, when he knows not what to do.”
We search to come up with some nice things to say,
“You’re a good climber, like a monkey today!”
“You scoot really fast,” as another zooms past,
He yells half-heartedly then chases alas.
The play-dates of spring-time are around the next corner,
With changing and growing it seems to get harder.
No longer is it just “say thank you and please,”
It’s now quietly coaching to play with ease.
Clueless and oblivious of how to treat friends,
Whispers in his ear, prayer that he blends.
This autism thing has so many levels,
Some days I see angels. Others; red devils.
Way bigger than me, I know not what comes next,
I do know one thing, our family is blessed.
Spectrum disorders do rock your world,
Keep a ‘spot’ on the wall like ballerinas who twirl.
Life passes by in the blink of an eye,
Cherish each step and your hero will fly.
Saturday, March 3, 2012
Today I feel small, though I’m really quite tall.
Hangin’ with Jake reminds me of it all.
Some days I can plan and handle this load,
Others I survive; two wheels on the road.
Disabled or not, he strives to fit in.
Playing and mimicking kids on a whim.
When we laugh, I just marvel at how his brain works,
Jake searches for words, but out come blunt hurts.
For the first time this spring, Jake met friends in the ‘hood.
They race and they chase and were really doing good.
So excited with glee he knows not what to say,
He starts calling names and then scoots away.
Girls get upset and tell me of these tales,
“He called me an elephant with big hairy scales!”
Correcting and teaching this job never ends,
We apologize and struggle to keep our new friends.
“I’m sorry I called you a name,” he yells up the tree,
The friend takes it in and swings down on one knee.
I cover for Jake and say “I’m an elephant too,
Trust me I hear it, when he knows not what to do.”
We search to come up with some nice things to say,
“You’re a good climber, like a monkey today!”
“You scoot really fast,” as another zooms past,
He yells half-heartedly then chases alas.
The play-dates of spring-time are around the next corner,
With changing and growing it seems to get harder.
No longer is it just “say thank you and please,”
It’s now quietly coaching to play with ease.
Clueless and oblivious of how to treat friends,
Whispers in his ear, prayer that he blends.
This autism thing has so many levels,
Some days I see angels. Others; red devils.
Way bigger than me, I know not what comes next,
I do know one thing, our family is blessed.
Spectrum disorders do rock your world,
Keep a ‘spot’ on the wall like ballerinas who twirl.
Life passes by in the blink of an eye,
Cherish each step and your hero will fly.