Valarie and Jordan had an unusual love story...
They first met at a hospital....
Jordan was down with jaundice and was admitted in the same ward where Valarie's grandmother was recovering post her bypass surgery....
Jordan was constantly visited by his huge circle of friends colleagues and relatives which showed that he was a social person indeed....
He was a Medical Representative working for a pharma company...
He was looking forward to going back to work and feeling fit...
He would strike a conversation with Valarie as she waited patiently besides her grandmom to finish her meals and give company....
Valarie worked as a lab technician in the same hospital at the pathology department.
Hence it was easier to visit her grandmother between her shifts and work hours...
Within a week of their introduction they had already exchanged numbers....
Both were young and in fields related to applied science and medicine....
They had a lot to share and found each other pleasing to be with....
Valarie's grandmother was discharged first...
Jordan still had a few days to go until his reports became normal...
Even after discharge of her grandmom, Valarie came to say hi to Jordan after her duty hours and ended up chatting with him for quite some time...
They became friends....
Jordan was discharged after almost another week....
They met out once he resumed work in a coffee shop...
Then they met at a mall...
Then went for a movie and then they kept meeting....
No one ever said I love you to each other....
It was understood and it was beautiful....
One day Jordan asked Valarie to come and visit his parents
He had already told them about Valarie and they were eager to meet her...
Valarie was received very warmly at Jordan's home....
Jordan's parents then asked her to tell this to her parents and fix up a meeting....
At Valarie's house an informal engagement took place...
Both families were delighted seeing their children happy and in love...
The marriage took place in the church with family and friends from both sides enjoying to their hearts content....
It was almost like a dream come true moment for the families of Jordan and Valarie...
Marital life was blissful with full cooperation from her in-laws with respect to her changing shift duties at the pathology lab.
A year went by and Valarie gifted Jordan with one of the most precious gifts on their first anniversary....
Her pregnancy report...
Everyone was overjoyed and there were celebrations and baby showers that followed....
A healthy baby boy was born, he was named Zeus...
Since Jordan and Valarie were well read and from a medicine related profession they were keen observers....
They noticed that Zeus never gave big smiles or other warm, joyful expressions by six months, neither back-and-forth sharing of sounds, smiles or other facial expressions by nine months nor babbling sounds, gestures such as pointing, showing, reaching or waving by 12 months....
They got him checked for his optical and hearing development....
He seemed normal...
He did not utter any words by 16 months and hence they took him to a speech therapist who noticed that he not only lacked speech development but also had compromised social skills....
The speech therapist treated Zeus for a few months with little improvement by 24 months....
He was yet not imitating or repeating any words and hence she referred them to a padeatric neurologist for developmental screening...
After several tests they found out that he had ASD Autism Spectrum Disorder
They were calm as parents and immediately started reading up on the subject to understand more and be equipped for what was in store....
They were first puzzled as to why it would happen to them...
They learned that Autism risk factors involved events before and during birth which included advanced parental age at time of conception (both mom and dad), maternal illness during pregnancy and certain difficulties during birth, particularly those involving periods of oxygen deprivation to the baby’s brain.
None of these had happened during Zeus's birth...
However they kept in mind that these factors, by themselves, could not cause Autism.
Rather, in combination with genetic risk factors, they appeared to modestly increase risk for an occurrence
So the first step towards treatment was acceptance....
They then did everything they could for little Zeus....
It was difficult for them however to come to terms with the fact that Zeus never responded to gentle touch or hugs with affirmative response and warmth...
Though parents with awareness, there were times when they craved for cuddling and affection that other kids could show....
Zeus had sensory and tactile issues...
Though sharp with numbers he grew up with the nurture and care of a great medical team of health care professionals who made life easier for Jordan Valarie and their families...
What they learned as Zeus's parents was - being a parent of a kid with Autism doesn't make them a superhero not even close to being anything super.
They don’t spend enough one-on-one time with each other and its okay, they do lose patience and raise their voice occasionally and yet they are fine.
They feel really successful on the days when they have kept least expectations and have experienced least disappointment....
They understand that they have a lot of insecurities and many times they do not know what to do.
They wing themselves by trying to read up as much as they can and rightly so however at the end of the day , they are the ones who ultimately take the decisions and most of the times aren't sure if their decisions are the right ones.
In spite of the above, they are experts when it comes to Zeus even though they can never claim to be experts on autism.
When a teacher or doctor tries to tell them what is best for Zeus instead of asking them to collaborate about what is best for them, they do not make any progress.
They want to be asked, not told, how to best interact with their child.
They like to talk about Zeus a lot.
Something seems to happen to women when they give birth.
The number one topic of conversation is no longer clothing, hair products, recipes, or movies.
The conversation now revolves around their child.
As parents of a kid with special needs they are no different.
Parenting Zeus is sometimes lonely and exhausting.
Yeah they know all parents are tired but there is a difference between physical stress and emotional exhaustion.... in some ways that may make it a bit harder because Jordan and Valarie know all the things Zeus and they are missing out on.
They have compromised a lot more than just physical rest....
A disability often taxes a family emotionally.
Typically developing kids grow up, learn to do things for themselves and become independent learn earn settle down and eventually leave home.....
Think about it.
Jordan and Valarie might never see Zeus do that....
Really....
They hope for the best but prepare for the worst in short term as well as long term plans....
They have to know where all the exits are, carry a bag of emergency supplies, and have a plan B in place at all times.
They have very flexible plans for Zeus’s future as an adult since Zeus might never “grow up."
Raising Zeus is expensive, he requires therapies, doctors, medications and schools that typically developing children do not.
One of the things they hear a lot are, “You get help with all of that right?” to which they laugh....
"Just who is supposed to be helping us? The federal government? The state? The insurance company? Who? We mortgage our homes. We take out loans. We work extra jobs. We do without things. We use our savings and our retirement accounts."says Jordan.....
Just that they are not in debt until now...
Jordan and Valarie feel hurt when Zeus hurts himself...
Sometimes Zeus has to do really hard things, academically, physically, or mentally and they have to watch, hands tied, while they struggle.
Sometimes they see their child's pain, anxieties, and fears incapacitating and there is nothing they can do to relieve them.
When Jordan watches Zeus wringing his hands,because he is fearful of what lies ahead, he becomes physically ill himself.
As parents of an Autistic child they need encouragement, not pity.
They are proud of their Boy, they celebrate smaller milestones than parents of other normal kids but this makes them no less precious than others...
Because parent-child love is universally profound, well, generally almost always whether the kid is normal or special, each baby is special for its parents....
Valarie assertively feels that there is nothing to feel sorry about or ashamed for just because she gave birth to a "not so normal child" and an encouraging word means so much to her, probably more than what we will ever know.
As Zeus's parents, they have heard a lot of clichés.
“Everything happens for a reason”
and
“God only gives special kids to special people”
They hate clichés, they'd rather hear, “I prayed for you today” or “Your kid is sure making great progress.”
Sometimes, once in a while, Valarie feels guilty, What if I had not taken that cough syrup or used all of those cleaning products while I was pregnant?
What if we had started the early intervention sooner?
What if we had tried harder and done more therapies?
But then Jordan comforts her....
Jordan has been defensive at times....and there are reasons for it....
They have had a few really bad past experiences with Zeus's peers, other parents, and teachers,they have learned from past incidents that not all children or adults are kind.
Also, they know people are watching them and Zeus and they are different and they know it.
Both of them are very approachable, they WANT to spread awareness about their child’s disability.
Ask them questions and they will answer them.
They would much rather explain the how and why than have us guessing and misunderstanding.
They want to send out a message loud and clear, "Don’t stare but come over and ask us what you want to know...we love to talk about our kid just like you do and we don’t bite."
All said and done, being Zeus's parents is rewarding, more so than anything they've ever done.
The small things are often huge in their worlds and say“He has taught me more than I could have possibly taught him.”
We are not sure anyone could understand without walking in the shoes they walk in.
It’s life lessons that they learn, compassion, patience, joy, and empathy on a level that no one could have ever described...
Its their story, its their life...
However, it almost feels as if we are as much a part of their's as they are, a part of us, after knowing their tale...
May this team do really well in whatever life serves them with,,,,
#notsotinytales
- Prajakta Sathe
They first met at a hospital....
Jordan was down with jaundice and was admitted in the same ward where Valarie's grandmother was recovering post her bypass surgery....
Jordan was constantly visited by his huge circle of friends colleagues and relatives which showed that he was a social person indeed....
He was a Medical Representative working for a pharma company...
He was looking forward to going back to work and feeling fit...
He would strike a conversation with Valarie as she waited patiently besides her grandmom to finish her meals and give company....
Valarie worked as a lab technician in the same hospital at the pathology department.
Hence it was easier to visit her grandmother between her shifts and work hours...
Within a week of their introduction they had already exchanged numbers....
Both were young and in fields related to applied science and medicine....
They had a lot to share and found each other pleasing to be with....
Valarie's grandmother was discharged first...
Jordan still had a few days to go until his reports became normal...
Even after discharge of her grandmom, Valarie came to say hi to Jordan after her duty hours and ended up chatting with him for quite some time...
They became friends....
Jordan was discharged after almost another week....
They met out once he resumed work in a coffee shop...
Then they met at a mall...
Then went for a movie and then they kept meeting....
No one ever said I love you to each other....
It was understood and it was beautiful....
One day Jordan asked Valarie to come and visit his parents
He had already told them about Valarie and they were eager to meet her...
Valarie was received very warmly at Jordan's home....
Jordan's parents then asked her to tell this to her parents and fix up a meeting....
At Valarie's house an informal engagement took place...
Both families were delighted seeing their children happy and in love...
The marriage took place in the church with family and friends from both sides enjoying to their hearts content....
It was almost like a dream come true moment for the families of Jordan and Valarie...
Marital life was blissful with full cooperation from her in-laws with respect to her changing shift duties at the pathology lab.
A year went by and Valarie gifted Jordan with one of the most precious gifts on their first anniversary....
Her pregnancy report...
Everyone was overjoyed and there were celebrations and baby showers that followed....
A healthy baby boy was born, he was named Zeus...
Since Jordan and Valarie were well read and from a medicine related profession they were keen observers....
They noticed that Zeus never gave big smiles or other warm, joyful expressions by six months, neither back-and-forth sharing of sounds, smiles or other facial expressions by nine months nor babbling sounds, gestures such as pointing, showing, reaching or waving by 12 months....
They got him checked for his optical and hearing development....
He seemed normal...
He did not utter any words by 16 months and hence they took him to a speech therapist who noticed that he not only lacked speech development but also had compromised social skills....
The speech therapist treated Zeus for a few months with little improvement by 24 months....
He was yet not imitating or repeating any words and hence she referred them to a padeatric neurologist for developmental screening...
After several tests they found out that he had ASD Autism Spectrum Disorder
They were calm as parents and immediately started reading up on the subject to understand more and be equipped for what was in store....
They were first puzzled as to why it would happen to them...
They learned that Autism risk factors involved events before and during birth which included advanced parental age at time of conception (both mom and dad), maternal illness during pregnancy and certain difficulties during birth, particularly those involving periods of oxygen deprivation to the baby’s brain.
None of these had happened during Zeus's birth...
However they kept in mind that these factors, by themselves, could not cause Autism.
Rather, in combination with genetic risk factors, they appeared to modestly increase risk for an occurrence
So the first step towards treatment was acceptance....
They then did everything they could for little Zeus....
It was difficult for them however to come to terms with the fact that Zeus never responded to gentle touch or hugs with affirmative response and warmth...
Though parents with awareness, there were times when they craved for cuddling and affection that other kids could show....
Zeus had sensory and tactile issues...
Though sharp with numbers he grew up with the nurture and care of a great medical team of health care professionals who made life easier for Jordan Valarie and their families...
What they learned as Zeus's parents was - being a parent of a kid with Autism doesn't make them a superhero not even close to being anything super.
They don’t spend enough one-on-one time with each other and its okay, they do lose patience and raise their voice occasionally and yet they are fine.
They feel really successful on the days when they have kept least expectations and have experienced least disappointment....
They understand that they have a lot of insecurities and many times they do not know what to do.
They wing themselves by trying to read up as much as they can and rightly so however at the end of the day , they are the ones who ultimately take the decisions and most of the times aren't sure if their decisions are the right ones.
In spite of the above, they are experts when it comes to Zeus even though they can never claim to be experts on autism.
When a teacher or doctor tries to tell them what is best for Zeus instead of asking them to collaborate about what is best for them, they do not make any progress.
They want to be asked, not told, how to best interact with their child.
They like to talk about Zeus a lot.
Something seems to happen to women when they give birth.
The number one topic of conversation is no longer clothing, hair products, recipes, or movies.
The conversation now revolves around their child.
As parents of a kid with special needs they are no different.
Parenting Zeus is sometimes lonely and exhausting.
Yeah they know all parents are tired but there is a difference between physical stress and emotional exhaustion.... in some ways that may make it a bit harder because Jordan and Valarie know all the things Zeus and they are missing out on.
They have compromised a lot more than just physical rest....
A disability often taxes a family emotionally.
Typically developing kids grow up, learn to do things for themselves and become independent learn earn settle down and eventually leave home.....
Think about it.
Jordan and Valarie might never see Zeus do that....
Really....
They hope for the best but prepare for the worst in short term as well as long term plans....
They have to know where all the exits are, carry a bag of emergency supplies, and have a plan B in place at all times.
They have very flexible plans for Zeus’s future as an adult since Zeus might never “grow up."
Raising Zeus is expensive, he requires therapies, doctors, medications and schools that typically developing children do not.
One of the things they hear a lot are, “You get help with all of that right?” to which they laugh....
"Just who is supposed to be helping us? The federal government? The state? The insurance company? Who? We mortgage our homes. We take out loans. We work extra jobs. We do without things. We use our savings and our retirement accounts."says Jordan.....
Just that they are not in debt until now...
Jordan and Valarie feel hurt when Zeus hurts himself...
Sometimes Zeus has to do really hard things, academically, physically, or mentally and they have to watch, hands tied, while they struggle.
Sometimes they see their child's pain, anxieties, and fears incapacitating and there is nothing they can do to relieve them.
When Jordan watches Zeus wringing his hands,because he is fearful of what lies ahead, he becomes physically ill himself.
As parents of an Autistic child they need encouragement, not pity.
They are proud of their Boy, they celebrate smaller milestones than parents of other normal kids but this makes them no less precious than others...
Because parent-child love is universally profound, well, generally almost always whether the kid is normal or special, each baby is special for its parents....
Valarie assertively feels that there is nothing to feel sorry about or ashamed for just because she gave birth to a "not so normal child" and an encouraging word means so much to her, probably more than what we will ever know.
As Zeus's parents, they have heard a lot of clichés.
“Everything happens for a reason”
and
“God only gives special kids to special people”
They hate clichés, they'd rather hear, “I prayed for you today” or “Your kid is sure making great progress.”
Sometimes, once in a while, Valarie feels guilty, What if I had not taken that cough syrup or used all of those cleaning products while I was pregnant?
What if we had started the early intervention sooner?
What if we had tried harder and done more therapies?
But then Jordan comforts her....
Jordan has been defensive at times....and there are reasons for it....
They have had a few really bad past experiences with Zeus's peers, other parents, and teachers,they have learned from past incidents that not all children or adults are kind.
Also, they know people are watching them and Zeus and they are different and they know it.
Both of them are very approachable, they WANT to spread awareness about their child’s disability.
Ask them questions and they will answer them.
They would much rather explain the how and why than have us guessing and misunderstanding.
They want to send out a message loud and clear, "Don’t stare but come over and ask us what you want to know...we love to talk about our kid just like you do and we don’t bite."
All said and done, being Zeus's parents is rewarding, more so than anything they've ever done.
The small things are often huge in their worlds and say“He has taught me more than I could have possibly taught him.”
We are not sure anyone could understand without walking in the shoes they walk in.
It’s life lessons that they learn, compassion, patience, joy, and empathy on a level that no one could have ever described...
Its their story, its their life...
However, it almost feels as if we are as much a part of their's as they are, a part of us, after knowing their tale...
May this team do really well in whatever life serves them with,,,,
#notsotinytales
- Prajakta Sathe
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