Tuesday, May 28, 2013

I am Just a Girl

The greatest challenge I face, as a parent of a child diagnosed with Prader Willi Syndrome, is my inability to face my fear.

I am afraid.

I am afraid that if I neglect appointments, therapies or new treatment options, my son's life will suffer.

I am afraid if I do not make a better effort to manage his anxiety and his resulting behavior, he will become a monster.

I am afraid, if I do not secure our home, he will wander the neighborhood searching for food and instead find harm and danger.

I am afraid if I am not a "good enough" parent, my son will die.

I have been running away from this fear all of his life.

It has finally caught up with me.

When my son Nicholas was first diagnosed with this monstrous syndrome, I experienced a type of shock. I buried my fear by devoting my life to a constant state of movement. I figured if I stayed busy enough, I wouldn't have time to feel anything. Nick's complex medical needs made this warped philosophy a convenient reality.

I became selfless, devoting myself completely to my weakened child. This chaotic lifestyle took me to a lonely place where few folks in my life could relate. I lost friends and family members. But still I persevered. I tried to make sense of my suffering by researching many forms of religion and spirituality. Here, I was interested to learn that most, if not all of these beliefs shared a similar philosophical promotion of selflessness and a belief in its path to peaceful living and enlightenment.

The only problem was...I didn't feel enlightened.

All I felt was tired.

After much soul searching, I have discovered that perhaps my selfless intentions are somewhat misguided.

Am I being selfless because I truly want to be selfless?

Do I enjoy it and feel energized by the experience?

Or am I staying busy just to hide my fear?

These are difficult questions but I believe the answer is....

I am afraid.

I am afraid if I allow myself to feel this fear, it will consume me.

So, I don a new persona. I compare myself to the likes of superheroes and soldiers and in the process I begin to lose myself. I bury my hopes, my dreams, and my health, so that I can better care for my son.

I have become a cartoon caricature and not a human being.

Last week, I got my wake-up call.

A visit to my primary physician indicated that I may be headed down the dreadful path of self destruction.

My blood pressure has begun to increase. I have always had low blood pressure. This shocking news made me think of my father who passed away suddenly from a stroke shortly after my first son was born. Realizing there was a good chance that I could face a similar fate, I did some soulful reflecting and found that my previous motto of "to do" needs to be replaced with a healthier "to be" philosophy. If I do not find a more relaxed mindset, and do not take better care of myself, who will care for my children? This is, of course, my biggest fear.

I need to find my peace.

I realize however, that this will take some time.

I am considering things like exercise, meditation, and creating new hobbies. I am also visiting with a mental health professional who is well versed in the stresses associated with raising children with special needs.

I am learning that...

Before I can give selflessly to another, I must first be fearless in my understanding of myself.

I must realize that I am not a superhero or soldier, I am just a girl.

I am a girl with a very big responsibility.

I am responsible for the quality of life of a medically fragile child.

This responsibility often makes me tired and scared.

It is very OK to feel this way.

My son Nicholas has endured many medical, physical and emotional difficulties and yet he faces each one of these challenges with a sense of calm acceptance and fearless resilience.

It is this spirit that I need to embrace.

Ironically, it is my son who makes me want to become a better, more accepting human being.

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Lisa Peters writes about family life at www.onalifelessperfect.blogspot.com.

This month is Prader Willi Syndrome Awareness Month, to learn more about this syndrome, please visit our blog or contact our national organization at: www.pwsausa.org.  Thank you for reading.

Saturday, May 25, 2013

When they graduate.

A couple of days ago we were celebrating the high graduation of the daughter of one of my best friends. She's an amazing student who graduated with honors. She's a delightful young woman who is in a dance troop and has been for years, she's a sweet person, she's headed to college and I think she has a good head on her shoulders. Her graduation was a celebration of who she's become as she's matured into a really terrific person. 

As I watched her sit on the stage, smiling, I got to thinking about my own childrens' graduations and how celebratory it will be, but possibly for different reasons. I'm sure we'll be proud of the young adult humans they grow into, but on this day I was thinking about all of the other things I might be thinking that day, presumably 5 years and 7 years in the future. 

I will be grateful to the care team that kept them alive to see that day, especially the doctor that helped save my son from suicide. 

I will be grateful to the kidney donors that each gave a kidney so my son could get off living on a machine and help make sure my daughter didn't need one. 

I might be grateful for another kidney donor, in the event one or both of their bodies reject their kidney or I could be grateful for a dialysis machine for keeping them alive. 

I will be grateful they survived high school without needing liver transplants. 

I will be grateful that we had resources and scholarships that allow them to attend a small, private school for kids with special needs. 

I will be grateful for the therapists that allowed my kids a safe place to discuss the stresses in their lives, helping them navigate their differences with confidence. 

I will be grateful to family and friends who have helped us get to that day by supporting us in many tangible and intangible ways throughout the years. 

I will be grateful the kids will have enough stamina, strength, and perseverance to have survived all they have with their confidence and hope for the future intact. 

I will be grateful they are alive. 

Julia lives in Georgia amongst grits and diet coke, her husband and two kids who have had kidney transplants, will require liver transplants one day and who has learning disabilities and mental illness. She blogs at Kidneys and Eyes and is the co-founder of Support for Special Needs. 

Monday, May 20, 2013

For Mikaela

I am an autism mom of a little boy who wanders.  You can watch him on the playground, at home, or anywhere really.  His body simply carries him away.  He moves aimlessly at times, seeming to have no destination or goal.  He just moves.  There have been times that he simply wandered away from us.  It's not a part of autism that I can sugar-coat in any way; it's terrifying.

As a mom of a little boy who wanders, safety is always at the forefront of my mind.  My 4-year old autistic son Jack still sleeps in a crib and - luckily - has yet to attempt escape.  We keep a baby monitor in his room and will continue to do so for quite some time.  We still keep baby gates in our home and door knob covers on our doors all in the hopes that it would delay our boy from getting outside before we would know about it.

When we are out and about, someone has a hand on Jack at all times.  He cannot be allowed to walk completely independently, lest he wander or bolt in another direction.  He wears an ID tag on his shoe.  We tend to only take him places if there are two of us to monitor him.

You might say that we do it right, that we are vigilant parents, and that we have our act together about our son's wandering and impulsivity, and that surely no harm could come to our child...but you'd be wrong.  You see, in spite of our best efforts, we have had safety situations arise.  Jack has gotten away from us.

Once was at school.  I was there to pick him up at midday dismissal.  His class was on the playground.  Jack wandered off and got halfway to the front of the school from where his class was on the playground.  Between myself, his teacher, and his para-pro, we missed him wandering off.  The para-pro just happened to catch him out of the corner of her eye and took off running.  It could have been disastrous.

Another time, I had taken Jack to the park.  He likes the big slides, but cannot climb them himself.  I helped him up.  By the time I got down to the bottom of the slide, he had wandered off.  It took me several minutes to find him, though it felt like hours.  He was dangerously close to a creek.

Was I being a bad parent?  Had I dropped my guard?  I'd argue that I had not.  Instead, unanticipated situations occurred and lessons were learned to make the next time safer, but the result could easily have been the opposite.  Up to now, I have been lucky.

Which is why when I heard about the disappearance and eventual passing of 9-year old Mikaela Lynch - a little girl with autism who wandered away from home - I felt a lump in my chest, because it could easily have been me.

You see, Mikaela was outside playing with a sibling.  Her mother was nearby and outside as well, doing a bit of maintenance on her home.  Mikaela's sibling got startled and ran off, and in the brief few moments in which her mother's back was turned and her sibling gone, she wandered off.  Her mother was just minutes behind her and called for help after her search yielded no results within a very short time period.  The result was tragedy.

What makes Mikaela's situation all the more sad is that her parents have come under scrutiny in the wake of her passing.  Questions are being raised - why weren't they watching her?  Why was her mother's back turned?  Why wasn't she closely supervised?

As a fellow autism mom, I'd like to answer for Mikaela's parents...it's because the kind of supervision that the general public expects in this case is absolutely not possible.  As autism parents, the care of our autistic child very often does come before the needs of anyone else in our household, but that cannot always be the case.  Other siblings have needs.  Occasionally, something needs repair or a load of laundry needs to go in the washer.  A phone needs to be answered.  A diaper changed.  A sibling fed.  Beyond that, occasionally us autism parents need to go to the bathroom or shower or - dare to dream - sleep.  It is impossible for us to have our hands and eyes on our children at every moment of every day.

If you are a parent of typically developing children and want to know what this experience is like, spend a day trying to do just that.  Keep your eyes on your child at all times.  Hold their hand every moment that you are away from home while they are trying to get away (neither NT children or autistic children want their parents to constantly hold their hands...it's a challenge to do so), and when your child slips from your grasp, hold them by the wrist, because it's the only way you can keep them under your control.  Keep every door deadbolted.  Keep the bathroom door open when you are in there (or better still, take your child with you).  Keep a monitor in their room and see how little sleep you get (or better still, have your child sleep with you).  Do not cook, clean, bathe, eat, or do anything unless you are within arms reach of your child and watching them.

Then, try to do all of that with a child who has a diminished sense of danger.  A child who is naturally attracted to water, but who does not have the safety skills to successfully navigate that situation.  A child who does not understand the importance of staying near a caregiver and who will walk away.  A child who will do so silently so that no one hears him or her leave.  A child who - even if they are verbal - may be unable to tell anyone their name, address, or phone number.

Sound impossible?  That's because it is.  We can't do it.  No parent can keep their eyes on their child 24 hours a day.  It's simply not possible.  So, why is it okay to judge the parents of a child who was lost to wandering?  How is it that we can expect her to do the impossible?

Perhaps it's because it's easier to blame the parents than to blame ourselves.

See, there are things we could do to prevent another tragedy like Mikaela's from ever occurring, and they have nothing to do with parenting and everything to do with support.  There are GPS monitoring bands that some law enforcement agencies give out to families with children prone to wandering.  Why don't we do this for all children at risk for wandering?  Instead of fighting insurance measures to provide vital therapies to autistic children, what if we made it possible for families to get the treatment their children needed to help teach them the life skills needed to reduce their risk of wandering?  What if we provided respite for these families so that the much needed second set of hands and eyes is available far more often?  What if - instead of judging - we extended a hand to our neighbors and said, "You seem like you've got a lot on your plate...how can I help?"

What if our efforts went into supporting these families and helping to build the resources so that another family does not have to lose a child, rather than placing the blame on someone who did nothing wrong?

Adding public scrutiny to an already tragic situation is no way to honor the memory of this sweet child.  It wasn't Mikaela's parents' fault any more that I can blame myself for Jack wandering off in the brief seconds before I could get to the bottom of the slide.  Both of our situations were those of two families who were doing the best they could to live as good of a life as possible without letting autism get in the way.

It could have been me, but I was lucky.  Luck - that's the only thing that made a difference between Jack's outcome and Mikaela's.  It's time that we quit pointing fingers and move to create real solutions for families raising children who wander.  Blame will only carry us so far.  It's action that will bring about change.


Since this was written, the lives of two other children were lost to wandering this week alone.  I urge you all to establish an action plan for if your children wander so that you can think clearly and call the authorities - just as Mikaela's parents did - providing vital information in the face of panic.  There are resources to help.  The National Autism Association provides a "Big Red Safety Box" free of charge to families with wandering children.  It is where we got our door alarms and Jack's ID tag.  Please go to http://nationalautismassociation.org/big-red-safety-box/ for more information.

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Jeanie is a former engineer turned stay-at-home wife and mom to an amazing 4-year old little boy on the autism spectrum.  After her only child was diagnosed at 24 months with autism and an alphabet soup of special needs, she began to write about life parenting a very young child with special needs with honesty, optimism, and as always, a touch of humor.  

When not posting here, you can find Jeanie at her regular blog, Reinventing Mommy.  She has also been featured on The SPD Blogger Network and The Oxygen Mask Project, to name a few.  To follow more of her ramblings and get the latest on her posts, like her on Facebook or follow her on Twitter!

Sunday, May 19, 2013

Absentee Mom

That's me.  This week, I have been totally unable to take care of my kids.  In fact, I haven't directly even seen them (except for video calls) since Tuesday.  I have relinquished 100% of everything to Dad.

I've ALWAYS been the one to take care of my 3 munchkins/monsters.  I chose to be a Stay At Home Mom and make that my Number 1 responsibility and priority over 5.5 years ago (when the twins were about 9 months old).  Dad continued to work outside the home to make sure that there was a paycheck and would always try to do his part when he was home, but we don't generally leave them with a sitter (translation, practically NEVER) and I only generally leave all 3 kids in his care for brief periods of time.

But this week, things changed.  On Monday, I got sick.  By Tuesday, despite "feeling better", I knew something was really wrong so he took me to the emergency room.  And I've been in a hospital room ever since.  Dad has been working hard to take good care of our children single-handedly, and he's doing an AMAZING job.  But, I can't help but feel I'm not pulling my weight.

I know that, we all need to take care of ourselves before we can take care of someone else.  But when doing that literally isolates you from your children, all you want to do is cry.  Dad has visited every weekday but we both know that Music Man's anxieties makes my desire to see the kids impossible.  And I'm grateful for the technology at our fingertips allowing us to make "FaceTime" calls to one another so, not only do I get to here my children, but I get to see them too.

But it all doesn't lessen the feeling of being an "Absentee Mom".


My name is Ilene and I'm a SAHM living outside of Washington, DC with my wonderful husband, 3 children, and my dog.  My two younger children are twins, and are both on the spectrum.  I normally spend nearly all of my time taking care of my family, except when circumstances prevent it.

I haven't been blogging much lately, but when I do, it's at http://myfamilysexperiencewithautism.blogspot.com -- please come and check out our stories.

Saturday, May 18, 2013

Here's to the Dads

Today is my husband's birthday. You know him as "STM" on my blog and as "Ed" in my book. Around here he has any number of nicknames, too, I can't remember the last time I called him by his rightful name. Wil, our son, however, does call him his first name. Not sure when Wil made the conversion exactly, but it's been at least a couple of years. He calls his dad by his name, and he calls me "Care." While others might find this disrespectful, we do not. Of all the things on the long and getting longer To Worry About List, this does not even show up at the bottom.

I think it's only appropriate to stop regularly scheduled blogging to give a shout out to my husband, Wil's dad, and all the other partners and co-parents out there. While enough has been made of what being a special-needs mom has entailed for me, not enough has been made of the sacrifices, strain, stress, and significance to the often times unsung heros, the dads.

It can't be easy having 100% of the financial burden fall to my husband. Right about the time Wil started getting expensive, I quit my job.

It can't be easy having your wife go from hanging on your every word to not having time or energy to give you for weeks, months, or even years on end.

It can't be easy re-arranging your work schedule to be at doctor appointments, come home early so your wife can go out with friends, and at times be the full-time parent while your wife leaves town to gather herself.

It can't be easy to have dreams of what being a dad will be like, and then to accept that those dreams just ain't ever going to happen, despite your creative ways around the circumstances.

It can't be easy being a man and listening to most other men talk about their kids' sports, driver's licenses and plans for college.

It can't be easy.


But nobody can share the joys, successes, accomplishments and just how far we've come, either, quite like the one you've been on this journey with from the beginning.

And will be to the end.

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Carrie is a parent and advocate of a child with special needs and even more special gifts. She blogs at http://carrielink.blogspot.com/ where this is pretty much her favorite topic. Carrie’s book, WIL OF GOD: Embracing the Relentless Love of a Special Child, is available in print on Amazon and all e-readers.

Tuesday, May 14, 2013


On Sunday, Mother's Day, I had the most amazing experience. I participated as a cast member in the San Francisco Listen to Your Mother show. Fourteen of us took the stage, sharing our stories to give "mother's day a microphone."

I live in San Jose, about an hour's drive south of San Francisco, and was full of nervous energy as I drove north on the 101 freeway. I psyched myself up on the drive, talking to myself out loud. I practiced my piece, especially the last line. I didn't want to get choked up on stage. I looked for messages of inspiration in the billboards. One was for an upcoming movie and stated "It's going to be epic." "It is!" I said aloud. Another, for a local hospital, pictured an enormous baby fist. I gave that baby an imaginary fist bump as I drove by. "Bam!" I said. "Let's rock this thing."

The last time I was similarly inspired on the freeway was in the mid 1990's. I was a couple years out of college, driving from Berkeley to Palo Alto for a job interview. I drove, south this time, through the tech corridor. It was an exciting time in Silicon Valley, and I felt that entrepreneurial spirit building within me as I passed billboard after billboard for tech companies quite literally creating our future. I got the job that day, doing tech support for a startup called WebTV, despite my complete lack of technology experience. It was a defining time in my life.

Sometimes that drive down 101 seems a lifetime ago. I've been a stay at home parent for six years. We are coming up on the four year anniversary of my son's autism diagnosis. I recently had a round number birthday. It is easy to get bogged down in this life of special needs parenting, to focus on getting through the day and forget to be inspired. To feel like the best is behind us.

Listen to this mother when I tell you it is not. There is something about standing on a stage in front of 300 people and baring your soul. I owe so much to the producers of the San Francisco show, who put their faith in me. They allowed me the opportunity to not just share my story, but also to prove to myself that I have so much more to do. And to the other women in the cast, who shared so much of themselves and reminded me that we can all learn from each other, no matter how diverse our experiences.

And most importantly, that a good cry, followed by a really great laugh, can get you through just about anything.

Saturday, May 11, 2013

Happy Mother's Day

Some people become parents easily.  A bottle of wine, a little music.....   Some people become parents by accident.  A bottle of wine, a little music.........  You get the picture.

For me, it was a harder journey.  When I married Shannon we talked about prudently waiting for children.  That lasted all of three days.  We decided that if we were going to have them we were going to have them.  So I eagerly waited and hoped.  But soon things went wrong.  There was month after month of no baby.  Watching my friends have babies.  Putting on a happy face while everyone in the world got pregnant.  But me.

I also found out that I just can't seem to carry a child to term.  So my heart broke a little more over miscarriage and I was falling apart.  I wanted kids.  So many rotten people have them and Shannon and I were the good guys.  Why couldn't we?

While I was dating Shannon I had told him I wanted to adopt one day.  I dreamed of going over to China and getting a little girl.  Shannon said he would like to have our own first.  So when that didn't seem to be happening I timidly approached the subject again.  Shannon agreed but told me that he wanted to adopt from the US.  We have plenty of children here that need good homes.

So with no idea of what we were getting into we took classes, had strangers in our homes, let people pick over our finances, jobs, lifestyle, and religious beliefs.  It was exhausting, scary, and overwhelming.  But after about three years we adopted our first child.  Our son.  I was a mommy and I loved it!

I had thought after years of working in early childhood that I knew everything.  I found out I knew nothing and that I would never sleep in on the weekend again.  So we had a few years with Marvin and I started feeling that twitch again.

Shannon was not as enthusiastic this time when I broached the subject.  We had been through the ringer.  Why do this again?  Aren't we the perfect family?  But after talking it out and thinking it over we decided to try one more time.  To keep my sanity I started to blog.

After another round of roller coaster rides and feeling like quitting our second child was presented to us.  We were told she had many special needs and the chances of getting her adopted would be very slim.  But when I held her in my arms that very first time, I knew she belonged to me.

So was it worth all the drama?

Yes.  Every stinking bit of it.  Is my life crazier than I imagined?  Yes.  Do I find myself channeling my mom after I vowed never to do that?  Yes.  Do I complain about them, threaten to sell them to the zoo, and find people staring at me in the local grocery store while I babble like a complete fool to my baby?  Yes.

But no matter what I say or feel at the end of each day I look at them and remember.  Remember how lonely life was before they came to our home, how quiet it was, how incredibly empty it was.  And I am so thankful that these beautiful blessing came to live with us.  I would never have it any other way.

Happy Mother's Day. 

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Amy Fields is a wife, mom, Montessori teacher, and rabbit rescuer.  You can read about her crazy life at manykindsoffams.blogspot.com. 

Sunday, May 5, 2013

What if?

Where to start?

I suppose the easiest thing to do would be to jump in feet first and blurt it out.......

I am going to visit a residential home for my teen. 

Damn, writing that sentence hurt far more than I thought it would.

If you have been following my Hopeful Parents posts, then you will be aware that a close friend of mine was involved in a tragic accident and she has been left with a severe head injury. She is no longer capable of caring for her 15 year old daughter who has special needs.

This has been a big wake up call for me and I have been asking myself the question, "what if anything happens to me and/or my husband?" It is a worry.

I realise that most of us don't even want to think so far into the future, however, as I am discovering, the future arrives very quickly. My son turns 14 this month. If he was walking a typical developmental path, he would be leaving home in just under 5 years!

As it stands today, my son will never be independent and will always need life long care. 

Scary thought, hey?

In my country, there is very little in the way of residential facilities for adults on the spectrum. In fact there is nothing in our province. The home that I am going to be visiting caters for adults with Down Syndrome and Cerebal Palsy.  It has a good reputation, although I don't actually know much about what life is like for those living there.

Do I want to put my son into a residential home? Of course not! I am happy for him to live with me forever. However, remember that my forever is not his forever.... and again, what will happen to him if he was to lose us. Circumstances change at the flip of a switch.

This home has a waiting list of 7 to 10 years, perhaps longer (and this is for the first person on the list!!). The cut off age is 31. All that is needed at this stage is to place my son's name on that list..... just in case!

Will they turn my son away because of his autism? Well, that remains to be seen!

I will be visiting the facility with one thing in mind........

Is this residential home the right place for my son?

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Di blogs about Autism, life, RDI and other stuff over at Bright Side of Life!   


Friday, May 3, 2013

Talking about R

An elderly mother of a special needs adult woman, told me how difficult it was living in a small community.

While she and her friends had children at the same time – their children kept growing and progressing – while her daughter stayed eternally 10 years old

Then those peers had younger siblings who also grew up and passed her by.

Then those peers had children

Then those peers children turned 11

You get the drift

I am thinking of this mother as I sit at a work event when friends and colleagues are talking about their children – the same age as R

Nobody is boasting but their world is so different than mine

Their World: Soccer, talking back, interest in the opposite sex

Our world: OT, PT, ST

I used to find these conversations uncomfortable.

I used to wonder how to participate

In the way unwillingly-single women feel around couples – (those that Bridget Jones calls the smug-marrieds.)Like their way to be is the right way to be.

But I always remembered this conversation with that elderly woman and I had sworn then that I would try to not be that way 

This was before I was the mother of an special needs child

And when I became one - I really understood what she meant - and how important it would be to not have these feelings

And so  I practiced my way out of it

They talked about their kids and I talked about mine

The more I talked, the easier it got

I talked about his oddness, his brilliance, his sweetness, his obsessions, his mama’s-boyness, his autisticness

I talked about our struggles with finding the right schools, his love of kiddie shows,

The 5 things he will eat and his passion for flashcards  

And guess what - no one seems bored.

There are no awkward silences

No looks of pity

I listen to their tales of lacrosse and they listen to my tales of Floortime

And we find things in common.

 I think it’s an important skill to have.

While the kinship we have with parents of special needs kiddos is so important, we will lose out on many important relationships if we keep ourselves away from the non-special needs world

Its not just about looking comfortable in conversations with the non-special needs world

But it also trickles down into how we feel about our life

Like an outsider or an insider

Grateful or resentful

Proud or ashamed

"The mind is everything
What you think
You become "


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K writes about Love Life and Autism at  Floortime Lite Mama

Wednesday, May 1, 2013

The Reluctant Caregiver NYT

A recent piece in the New York Times with this title came to my attention.  Yes, sometimes it sucks.  But there are different types of reluctance for different reasons.

Most of us didn’t plan on being caregivers of children with special needs who may need lifelong care.  Though there are a few, such as Family Voices Pennsylvania Coordinator Sue Badeau, who astonishingly adopted up to 20 children with special needs over her lifetime.  And now there are even special needs adoption groups such as CHASK (Christian Homes and Special Kids) etc.  But most of us didn’t plan this.

Sometimes I’m a reluctant caregiver because I just want to be her mom.  I get tired of being a teacher, behaviorist, physical therapist, case manager, nurse, etc.  I just want to enjoy my time with her.

Sometimes it’s because I’m just tapped out with round the clock care.

Or I don’t want to go to the hospital out of state, and live apart from my husband (who goes to work during the week) for who knows how long, again.

Or physically, emotionally, mentally weary of the constant changes, lifting, medications, paperwork, insurance denials, treatments and deciding if it’s safe to maintain her at home or do we need to go to the E.R., and what if I guess wrong?  I’ve literally gotten her to the hospital with no other signs than “something is wrong” within hours of a major hemorrhage that put her in ICU for 4 months.

Life isn’t even what passes for normal around here anymore.

But then I think what it must be like for her.  A recent article indicated that children can actually suffer PTSD (Post Traumatic Stress Syndrome) post hospitalization.  Another showed that 1 in 3 (even adults) suffer PTSD after being on a ventilator, like she was.

I noticed a difference when she came home.  She didn’t feel safe even though we have a baby monitor on.  We had to get bedrails and we have a whole bedtime relaxation routine now.  We do massage, Reiki, Qigong, and read poetry.  She has both soothing music and a sound machine of falling rain on all night.  She does word search puzzles for hours until she falls asleep.  And she sleeps with the light on.

What must it be like to have to depend on someone to hear you even if you just need a glass of water?  What if you can’t get to the bathroom and need help?  Or are hooked up to things like IVs, Foleys, PICC lines/Broviacs, IJ’s/Medcomps and can’t move?  Forget the scary and painful stuff that goes along with illness.  And not know what to expect or when (4 a.m. labs anyone?)

Just think what it must feel like to depend on other people for things you used to do for yourself.

When your child acts out, just remember the most likely they can’t help it.  My child’s behavior is the worst when she’s in pain, on TPN (total parenteral nutrition through her veins) and can’t eat for 5 months, or frightened etc.  Their behavior is how they’re communicating.  They feel like they have no control over anything in their world.

And maybe that will help you not be “The Reluctant Caregiver.”

Remain hopeful,


“The Reluctant Caregiver” NYT

PTSD in Children with Complex Medical Needs-Complex Child magazine

Ventilated Patients and PTSD-Medical News Today