Friday, April 18, 2014

Good Friday


When I realized this would post on Good Friday, I thought about how to approach that. I recognize not everyone celebrates Easter, and the last thing I want to do is alienate anyone. Here's the thing, though, my son just got invited to help hide Easter eggs for a neighbor that's having a huge party. He helped her last year and had an absolute ball. Knew and loved everyone there. Ate it all up with a spoon and talked about it for months. Thought for sure he'd jump at the chance to do it all again. In fact, just today, when asked what his plans were for Easter, he said, "I'm helping with an Easter egg hunt."

But. That was when he assumed the hunt was in the afternoon. As in, after noon. He is booked solid from 7:45 to noon each and every Sunday. He rides his bike up to church, watches the choir set up and practice, greets all the 8:30 parishioners, attends church, goes to coffee and donuts, then back over for the whole shebang again.

So, when the neighbor called to see if he'd be free at 10:30 to help, I approached him. I already knew the answer, but thought there was a shred of hope he'd be willing to go to just one mass, and still do the Easter egg hunt.

"Ah, ah, ah, no, babe," he said in his Billy Crystal impersonating Sammy Davis, Jr. voice. "You know that Sundays are my reason for living!"

When I was a little girl, I distinctly remember asking my mom, "Why is it called Good Friday. I think it should be called Bad Friday." I don't remember her answer, other than it didn't satisfy me.

When I gave birth to a son nearly 18 years ago, there wasn't anything good about those first days, weeks, months and even years. It was torturous. A large part of me died in the process. It took years and years before I no longer thought of the diagnoses and future as "bad."

There has been transformation, now, "resurrection," if you will. From what I thought would be and isn't, from the ashes of the burned out plans and dreams, came the reality of the new reality.

It is good.

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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.




Saturday, April 12, 2014

Cheat Sheet

I have always promised to be honest while I blogged.  I would rather have the truth even if it is cold, hard and painful than a pretty well dressed lie.  Sometimes the way I see truth is different than others do.  But even if you disagree on it, it is still my truth.

The truth hurts at times.  This last week the truth came and smacked me over the head. Hard.  I still have some lumps left on my heart and cuts left in my soul.

It started out with a visit.  For a while I had been asking a local organization to come out and meet our family.  I had found the organization on line and loved the support that they offered.  I really wanted to be part of it and I know some families that are.  They rave about it.

It too some time but they came to my home.  They met me and Cary Lynn.  Then they wanted to ask questions.  Sure, no problem.  I glibly claimed I had answers.

The first question, "Would you put a trachea tube in your daughter?"  What???  Well, I have been asked many questions before, but have rarely been stumped like that one.  I had to think.  Well, I know many kids in my SN circles that have them and really I already had stuck a tube in the child for nutrients, what's one more?  "Sure."  I say slowly.

Do you wish in life that sometimes someone would just dangle a giant fish line from the sky with a piece of paper attached to it saying here are the answers to these questions.   This was one of those times.

The questions were hard.  The consisted of quality or quantity of life and would I resuscitate?  I was told there are no "right" answers, but I felt for sure that there must be.  There has to be an answer.  So I answered.  I'm not going to go into what I answered, but I felt that I was making the right choice and holding up my beliefs.

While it is hard to answer these questions it is still harder to pretend that they don't exist.  To not talk about them or even think about them.  The truth of the matter is that Cary Lynn has multiple special needs and is medically fragile.  It is a fact of life like the sky is above us and the ground is below us.  It also does not make this organization mean to talk about these things.  They are trying to help us by supporting our family with these choices.

It also does not mean that I am pushing Cary Lynn into her grave.  Believe me when I say no one loves her like I do and no one wants to keep her here forever and a day like me.  But sometimes you have to look at the truth and decide whether you are going to deal with it, ignore it and hope it goes away, or run from it.  I am many things, but I'm not a coward.  Nor am I going to pretend these things don't exist.  They do.

What it does mean is that each moment is a little more special.  I cherish time with my kids.  I enjoy the little moments and inch stones.  I laugh more and love a bit harder.  I hold tight to my little miracles.  Both of them.  I don't spend as much time sweating the small stuff (well at least I try not to).  We also don't spend every day dwelling on our mortality around here.  That is morbid.  And unhealthy.  Mostly I spend my days trying to figure out where the magical elf lives who steals the mate to my children's socks and why I can't ever find my keys and favorite coffee mug.  We live our lives like you live them.  We aren't saints or heroes, just regular people trying to navigate extraordinary circumstances.

In the end I'm glad I had the conversation.  I needed to have it.  It hurts, but it also heals.  I love my daughter.  She isn't worried about what tomorrow brings into her life.  She is a happy and joyful child.  No matter what she always has a smile.  She is strong, brave, and in my eyes pretty much perfect.  So we will celebrate each day and enjoy each moment.  I will leave the future to take care of itself and dwell in the present and in the moment with my little ones.


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Amy Fields is a mother, blogger, and has run into a bit of computer troubles so that is why this is a little late.  You can follow her at her blog, Many Kinds of Families

Tuesday, April 1, 2014

When You’re “Out of Commission”




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How can you take care of your child if something happens to you?  Family caregivers need to have a backup plan in case anything changes with primary caregiver of the child with special needs.   

When my child had her transplant, we knew we needed help just so we could sleep at night until she got her sutures out.  As she has autism, we were afraid she wouldn’t leave them alone and there was infection risk especially with a compromised immune system.  All I asked for was a home health aide for 8 hrs. until they were removed.  I had everything in writing in the hospital discharge plan but it was rejected once we got home.  So we realized we needed to get the agency to validate insurance coverage (not just that they accepted our insurance) and hours scheduled before going home.  In a previous blog, I mentioned we were eventually successful but lost a week of sleep until it was okayed. 

Fast forward several years and I needed surgery for the first time ever.  I applied for both private insurance and emergency respite.  Unfortunately, after the fact the private insurance sent a denial 3 weeks after my surgery and emergency respite was approved literally the last half hour of business the day before my procedure so would have been impossible to set up.  The only thing that saved us is 2 days before, my daughter started having problems and was admitted to the same hospital.  My husband was bouncing back and forth between 2 floors to make sure we were both ok.  But I was actually relieved because I knew my daughter was safe when I couldn’t take care of her.  You know something’s wrong when you’re glad your child is in the hospital.

So what can families do?
I realized that we had to appeal everything.  Just like when she had the transplant and we eventually got services.  I thought I had everything covered the next time with a doctor’s note from both her and my physician.  But the insurance company denied it as “custodial care.”  They seemed to think it was just care for her autism.  However, she has multiple conditions, medications, and other procedures we follow.  Hopefully there won’t be a next time but now I know what to do. 

Tips for Families
Ø  If possible, get a surgery date with enough lead time to set up help.

 
Ø  Get a doctor’s note from your child’s physician listing all the care needed, not just that they’ll need care. 


1.      Medications (this can only be done by a nurse)       

2.      Injections (subcutaneous/intramuscular)

3.      Rescue medications (e.g. seizures, adrenal insufficiency, or other life threatening conditions)

4.      Medical Procedures (tube feeding, catheterization, fistula care, etc.)

5.      Emergency procedures (e.g. CPR/1st aid trained personnel)

6.      Requirement for 24 hour care (e.g. condition requiring monitoring, child doesn’t sleep through the night, etc.)

7.      Monitoring (e.g. vital signs)
 
 
 
 
Ø  Get a doctor’s note from your physician with activity restrictions and expected duration.  You may wish to ask for an extra day or two as most people resuming daily activities do not do things like lifting, diapering, pushing a wheelchair, and bathing etc. for others.
 
 
One of the biggest worries family caregivers have is what will happen to their loved one if they can’t care for them.  There are ways to get backup plans in place and people who can help you do that (see resources below.
  
Resources
 
The Arc


 
Caregiver Action Network-resources


Family Voices/Family-to-Family Health Information Centers




Title V of the Maternal/Child Health Bureau



Remain Hopeful,

Lauren
 

Lauren Agoratus is a parent/advocate who works for the Statewide Parent Advocacy Network and serves as the NJ Coordinator for Family Voices (www.spanadvocacy.org), a national network that works to “keep families at the center of children’s healthcare” at www.familyvoices.org or FB www.facebook.com/pages/Family-Voices-Inc-National/137783182902269.  She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at http://caregiveraction.org/ or FB www.facebook.com/CaregiverActionNetwork


 
 
 
 

Wednesday, March 19, 2014

New Experiences, New Results

I live in an interfaith family.  Dad was raised in a Christian household, I was raised in a Jewish household.  Both of us feel our religious heritage is important and we look forward to sharing it with our 3 children.  However, when we got married, we agreed that we would have a dominant religion in our house and by the time Big Brother was born, we had agreed we would have a Jewish house.

That decision has had consequences.  I was concerned about how the balance would be maintained, so I held off for quite a while sending any of the kids to religious education classes.  But this year, Big Brother began Sunday School, and next year the twins will begin as well.  The rabbi has been very supportive and has copies of each of the twins' IEPs so that she can make whatever accommodations are possible to make this experience successful.

But this weekend was Purim.  This is probably the favorite Jewish holiday of most Jewish children.  It's kind of like Halloween and Christmas rolled into one.  This is the holiday where gifts are supposed to be exchanged (secular world has made this Chanukah).  Kids dress in costumes, eat sweet treats (usually in the form of cookies [known as Hamantaschen <the word literally translates to "Hamen's Hat">] which are triangular cookies filled with some type of fruit jam).  The story of Queen Esther is read and every time the name "Hamen" is mentioned all of the children make as much noise as they possibly can.  They use noisemakers as well as their own voices and bodies.  It's a very fun service, but it's easy to see it overwhelming any child, not to mention a child with sensory sensitivities as seen as those on the spectrum.

But this was the service I chose to take them both to.  Their first service.  Ever.

We had tried to prepare them.  Ballerina I wasn't very concerned about.....she may be overwhelmed at first, but would quickly recognize the fun of the activity and I expected she would be able to enjoy the experience.  Music Man, on the other hand.....he's always my loose cannon. I never know what will cause him discomfort and I can't be certain when he tells me something that he's describing his feelings or his mood accurately as he hasn't demonstrated that level of self-expression yet.  But sometimes, you just have to go for it.  So, I did.

We spent Sunday morning talking about the story.  And, every time anyone said "Hamen", we all made as much noise as possible.  He really didn't seem to get what was going on.  But we thought we had to do SOMETHING without being too obvious about the whole thing.  Then it was time to go.  The service started and many of the Sunday School children were dressed in their costumes.  My kids weren't (not sure what made me decide to not dress them for the occasion).  Then the groggers (noisemakers) were distributed.  All the kids were practicing making all the noise they could.  Still, Music Man looked intrigued but not excited.  Ballerina, on the other hand, was getting into it right from the start.  Then the story began.

Things started quietly.  Then, it happened.  "HAMEN".  And there was chaos.  Noise and screams and laughter and music.....everyone was making as much noise as was in their power to make.  And Music Man was SMILING.  He tried to spin his grogger.  When I noticed he was having problems with it mechanically, I gave him some hand-clappers and he joined right in!  And this continued, all the way to the last 5-10 minutes of the story.

Then things started to get to be a little much.  But he didn't complain.  He handed me the noisemaker (and wanted me to use it), but his hands went to cover his ears.  Whenever he heard the name "HAMEN", he looked at me and was clearly telling me that I was supposed to make the noise.  But then, when the signal for quiet was raised, he calmly told me to stop and be quiet.  He enjoyed the remainder of the service, sitting on my lap and watching.

2 years ago, this would have been a scream fest from the beginning and it wouldn't have ended until about 3 hours after the event was concluded.  How far things have come!!!!!

The service was followed by some snacks and the carnival (small stands put together by the teenagers in the youth group.  Big Brother won a cake for us to have for dinner and we headed home for lunch and to spend the rest of our Sunday doing our normal "Sunday" things.

But for dinner, when we were enjoying the cake, Music Man took a bite and said "HAMEN"!!!!  So what did we all do?

We made LOTS AND LOTS OF NOISE!!!!!!


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My name is Ilene.  I'm a Stay At Home Mom and I spend my time taking care of my 3 amazing children (nearly 9 year old son and 7 year old twins), my puppy, and my husband.  I also spend a lot of time working with our school's PTA where I serve as the Volunteer Coordinator and as the Special Needs Liaison to the PTA.

I have (historically) blogged regularly, but it has been AGES since I've sat down to write a blog post (this is my first post this year, period)!  But when I do, it's generally at My Family's Experience With Autism.

Please come by and read our stories.  And, hopefully, I'll be back there soon (as I greatly miss it)!

Tuesday, March 18, 2014

True Self


"The discovery of our True Self is not just a matter of chronological age. Some spiritually precocious children, usually those with a disability of some type, see through the False Self rather early, while lots of old men and old women are still dressing up what is soon going to die anyway." 
-  Richard Rohr
I read the above quotation recently and thought to myself, Yes, that's it exactly. I won't get into the finer points of what I think the False Self is or isn't, I will leave that to the experts. I am not an expert on the False Self, I only know that I have one, and I work to eradicate it daily. My son, on the other hand, the one with the list of disability acronyms as long as my arm, does not. That is not to say he can't be a giant pain-in-the-ass, he's far from a saint, but he has no ego (False Self). I'm not sure he ever really "saw through" the False Self, as much as he never developed on in the first place.
They say that ego is an "accumulated phenomenon" one attains by living with others - if a child were to live totally alone, they would not develop an ego. All this makes me wonder about the phenomenon of autism, and the "epidemic" we have going on now. I wonder how all this plays into the grand scheme of things? Does it stand to reason that those less likely to be swept up into the "norm," are actually the ones here to teach, not the other way around?

Food for thought.



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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, March 11, 2014

Lending a Helping Hand


Today is my turn to post.  I had a really good post ready about March and Cerebral Palsy awareness month.

But yesterday another blogger reached out.  A woman with a medically fragile child is looking for answers. For support.

Sometimes we don't have all the answers. Heck, most days I can't even answer why we don't have matching socks around here.

 Today I am going to post this link. I would encourage you to read it and share it. I know, I know. If there is one thing I dislike is being asked to share.  And then feel guilty because small zebras in Africa suffered because of you being a small minded person  and not sharing their plight.  But I promise no zebras will come after you and neither will I:).  

If you know anyone who can help this family or have any answers for them you can contact them through the blog link or you can find their face book page.here

You can find the blog link here.  The blog is called "Cause Caden Can if you have trouble with the links. I hope that you take a few minutes and read about this woman's journey. Having a daughter with so many of those medical conditions my heart goes out to her and I hope that somewhere there are answers to her many questions.  Because alone we can only do so much, but together we are an amazing group of parents and we can help each other stand strong.


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Amy Fields is a mother to two special and amazing kiddos!  You can follow her at her blog Many Kinds of Families.

Sunday, March 2, 2014

Bringing up Baby

When R was a little, he had a onesie with a sign “If only they would stay little”.

This is something that most mothers say.

Little was I to know how much he would like staying little and, if I am to be honest,  how much we would enjoy this childhood unfolding in slow motion

At 9, he has still retain such sweet innocent charm – that people often mistake him for a much younger child

My sister, on skype, will ask him to “fulfill all his baby jobs and give her flying kisses”, a nurse will giggle indulgently when she sees that R cannot blow his nose, someone will bump into him at the gym and instead of saying “Excuse me” they will give him a hug instead. 

People coo at him, instead of talk to him. He gets more spontaneous hugs and kisses than any 9 year old I know.

In fact , DH is probably the only one, in all of R's world that pushes him to act his age.

Many articles that adult auties write about things they wish we knew about them says how much they hated being “infantilized”.

But R LOVES being baby - in his self-concept- he sees himself as a small child. And he likes it that way

The other day he told me that he was a toddler.

Most neurotypicals have the peer pressure/natural incentive to start become more independent.

I remember my niece was barely talking and all she wanted to do was do things by herself, when she stopped wanting to be in our laps.

But it’s time to gently nudge him along on this journey.

To nudge myself along as well.

For its not just that I enjoy my sweet child so very much, it’s also that he was so ill for so long.

It’s made me want to be an armor around him – so defenseless and fragile he seems to me.

But that crisis has become part of our normal and we are no longer in that day-to -day mindset of urgency

Its time for this baby  and this baby-mama to grow up


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Floortime lite mama writes about love, life and autism at www.floortimelitemama.com

Saturday, March 1, 2014

“Who You Gonna Call? When Family Caregivers get hit on all sides”




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Family caregivers of children with special needs may feel overwhelmed when dealing with multiple “systems.”  This could include special education, healthcare, family support services etc.  Here are some common issues that may arise for family caregivers and resources to help.

School

The teacher calls regarding your child’s challenging behavior.  Your case manager calls and says they may need to change your child’s placement.

Most parents don’t know that they are part of the IEP team that makes educational decisions, including IEP development and placement. The Individuals with Disabilities Education Act (IDEA-federal special education law) states alternate placement only occurs if appropriate supports and services are unsuccessful.  For challenging behaviors, a Functional Behavioral Assessment (FBA) will show why the child is behaving in a certain way and a Manifestation Determination must be done to decide if the behavior is due to the disability before placement is changed.  Children are entitled to receive a Free, Appropriate Public Education (FAPE) in the Least Restrictive Environment (LRE) as close to home as possible.   This could range from having an aide, to resource rooms, to a separate classroom going from least first to more restrictive.  Families can get free help from their Parent Training and Information Center (PTI) - see resources below.

 


Healthcare

Your child is turned down for SSI/Medicaid.  The insurance company won’t pay for therapy your child needs.  Your home nursing hours are being cut.

Family Caregivers should know that they can appeal when their child is denied a service, therapy, or any changes.  Only 1/3 of families appeal claims even though half of the time it’s turned around in their favor on first appeal.  The best way is to send an appeal with a doctor’s note of why this is needed in writing, certified/return receipt, and keep copies to follow-up.   SSI and Medicaid can also be appealed usually by submitting additional information though families may need free advocates to help if this doesn’t work.  If your child’s condition hasn’t changed, there should not be a cut in hours and if they have more medical issues, hours should be increased.  Parents can get help from their state affiliate of Family Voices and/or their Family-to-Family Health Information Center-see resources below.

It is also important for families to remember that mental health falls under healthcare as well as physical health.  Caregivers should know that mental health issues are biologically based and there is no shame/blame as it is just like a diabetic who needs insulin.  The organ affected just happens to be the brain which symptoms manifest as behavior.  In fact, there is now mental health parity (treatment for mental illness is equal to available care for physical conditions.) The Affordable Care Act (ACA) should make it easier for families to access mental health as one of the 10 “Essential Health Benefits (EHBs).”  Families can get help with mental health issues from the Center for Social & Emotional Foundations of Learning (CSEFL), Federation of Families for Children’s Mental Health (FFCMH), or the National Alliance on Mental Illness (NAMI) - see resources below.



Family Support

The respite provider lets you know that they’re discontinuing their service.  The state department of developmental disabilities says that there is no funding for services.  You’re simply overwhelmed with dealing with your child’s condition.

There are many services considered “family support” such as respite, home modification, behaviorists, etc.  For parents of children with developmental disabilities there are even Governor’s Councils in each state.  Families may have to get creative in finding solutions.  For example, for respite families may be able to “self hire” and get reimbursed by an agency if their current agency is no longer providing services.  Parents may decide that their child no longer needs one service and that may free up funding for another.  Families may just need to talk to another trained volunteer parent of a child with the same condition to see what they did in the same situation.  Families can get help from the Council on Developmental Disabilities and all families (not just DD) can get help from Parent-to-Parent – see resources below.

 

Caregivers of children with disabilities need to know that they don’t have to “take no for an answer.”  There are ways to advocate to get the services their child needs, and organizations willing to help them. 

 

Resources for Family Caregivers of Children with Special Needs:

 Education
Parent Training & Information Centers
 
 
Health
Family Voices/Family-to-Family Health Information Centers
 
Mental Health
Center for Social & Emotional Foundations for Learning (young children)
 

 
Federation of Families for Children’s Mental Health
 
 
National Alliance on Mental Illness
 
Family Support
Councils on Developmental Disabilities
 
 
Parent-to-Parent
 
Remain Hopeful,
Lauren
 
 
Lauren Agoratus is a parent/advocate who works for the Statewide Parent Advocacy Network and serves as the NJ Coordinator for Family Voices (www.spanadvocacy.org), a national network that works to “keep families at the center of children’s healthcare” at www.familyvoices.org or FB www.facebook.com/pages/Family-Voices-Inc-National/137783182902269.  She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network in a volunteer capacity at http://caregiveraction.org/ or FB www.facebook.com/CaregiverActionNetwork
 
 
 

Friday, February 28, 2014

A Lockdown for Kitty

My son Nicholas is 12 years-old. Although he is in the sixth grade, he possesses the spirit of a child who is much younger. He delights in watching preschool television programs, admiring the colorful cartoon characters like Dora the Explorer and Diego the Animal Rescuer.

I believe the genius programmers working at Nickelodeon have actually achieved a kind of kid's television nirvana. They seem to have secretly extracted information from the depths of my young child's mind and created super kid heroes who spend their days traveling on adventure-filled expeditions rendering life-saving assistance to hurt animals and sad children. It is as if these television creators have turned our flat screen into a giant crystal ball. This magic square window grants them direct access to the malleable mind of my impressionable boy. Like a drug addict seeking crack cocaine, Nicholas is hooked....but good.

Nickelodeon's latest new kid's series entitled, Paw Patrol, features a hardy group of backpack carrying pups. These brave rescuers drive a variety of heavy equipment vehicles, sending my awestruck automobile and animal aficionado into a gasping and breathless type of kiddie coma.

It is not unusual to hear Nicholas singing along with this lively litter of puppy police.

"Paw Patrol, Paw Patrol, whenever you're in trou-ble. Paw Patrol, Paw Patrol, we'll be there on the dou-ble!"

I believe Nick's choice of rescue-related programming is contributing to the development of a kind spirit and an altruistic mind set. In fact, if you combine his obsession for action adventurers with the recent safety drill training he received at the elementary school, perhaps you would not be surprised to see this super sleuth junkie transformed into the New Rescue Hero of our House.

Let me explain.

As you may know, we recently acquired a kitty who has quickly grown into a full-sized cat. This rapid growth however, has been accompanied by some unusual behaviors. Our feisty feline seems to have developed a sadistic streak. He delights in playing a game of Hide and Pounce Warfare, a kind of Hunger Games for cats.


He has become an emotionless destroyer of dogs and humans. A kitty-sized serial killer hiding covertly behind bookshelves or furniture, stealthily waiting for a chance to viciously pounce on an unsuspecting family member or our poor panicky pooch. He has bitten and scratched unprotected arms, legs, ankles and the wagging tail of our horrified hound.

This aggressive behavior has disturbed the kind-hearted Nicholas.

But fear not dear friends, for our little hero is quick to take his cue from a rather long list of favorite cartoon caricatures. My Rescue Hero Wanna-be has designed a strategy to protect the entire household from the warmongering antics of our militant mouser.

This morning, I was in my bedroom preparing to take Nick to school, when I was startled by a loud sound.

SLAM......went the sound of Nick's bedroom door closing tightly.

Just Nick closing the door too hard, I thought to myself and carried on with what I was doing.

I jumped again when I heard a rather long succession of...

SLAM

SLAM

SLAM

I hurried out of my bedroom door only to find the cat streaking down the stairs in a frenzied bolt of flying black fur. The cats quick exit, a desperate attempt to escape from my safety-savvy son, who was in the midst of quickly slamming all the bedroom doors. This dramatic action, a carefully planned preparedness training procedure designed by Nicholas to deter the malevolent marauder from further maliciousness.

"It's lockdown Mom," he barked with a calm, yet assertive tone.

"Why are we in lockdown?" I asked, trying very hard not to laugh as the new Self-appointed Safety Sheriff began his first ever trial-run.

He placed his hands on his hips and with teacher-like authority, he slowly explained to his clueless mother,

"We have to protect ourselves from Flash. We need to be ready. You know Mom, sometimes people and CATS can hurt us."

 
Paw Patrol Rookie Recruit

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

Wednesday, February 26, 2014

Talking about the realities with our kids.


Me: "MRSA can be deadly, you know."
Son: "Yeah, I've had that too."
Simultaneously daughter: "WHAT?" and husband: "Don't tell her that."
Me: "It's the truth. It's not like we can hide those facts, plus we have to tell them the risks. We can't protect them forever."
Husband: "Geez."
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I brought my daughter to the E.R. the Sunday before a holiday last year because A) We always end up in the E.R. on a Holiday weekend and B) She had a nasty looking spider bite. It was raised and red and hot and hard to the touch and in the back of my mind I sort of knew it was probably MRSA but spider sounded less scary and so I went with that.
It was, of course, MRSA. Also known as the scary, hard-spelling name "Methicillin-resistant Staphylococcus aureus" which is known to send fear into the hearts of many immunosuppressed people and their parents. It's horrible to fight off, and can mean days in the hospital for kids like ours. Our son ended up in the hospital for almost a week when he had it and we tried the E.R. twice to drain it.
I've been thinking a lot about this conversation because I started to wonder if I throw too much at the kids too soon. Do I give their brains too much to handle for their age? For their development? Does sharing the truth and so much information make it easier or harder on them?
The truth is, I haven't a clue. I can only do what I promised both kids a long time ago, that I would always be honest with them about their healthcare. One of the rules in our caregiver/caregivee relationship is that we're honest with each other. They have to trust that I will have their backs when they need it and I have to trust that they will be honest with me so I can make informed decisions with them about their healthcare. I started thinking about what I did when talking to the kids about the harsh realities of their condition/treatments.
Telling my kids they are more susceptible to get a deadly infection isn't at all what I'd pictured my life to be like before I had kids. There are days when I feel like I am just monitoring the Dos and Don'ts of living a life-like theirs...
  • Take your meds!
  • Get regular labs!
  • Have regular kidney (and liver) clinic visits!
  • Wear sunscreen!
  • Stay out of the sun if possible!
  • Wash your hands!
  • Don't touch that bird!
  • Don't feed the birds!
  • Don't touch that ______!
  • So and so is sick, so you can't see them today!
  • Listen to your body...
There are some days I can't believe the conversations I must have with my kids, but then I realize I can only do what I think is best and helps prepare them. It's hard to talk about death and the realities of a disease that is unpredictable.
Even though it's hard, honesty always wins.
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ulia Roberts co-founded Support for Special Needs in 2010 for families touched by special needs. Married to Julian and living in Atlanta, Georgia, they own a small business. They are raising two kids who survived kidney transplants at age eight and require liver transplants in the future as a result ofARPKD/CHF, they also both have vision disorders and learning disabilities.