Wednesday, May 13, 2015

A Letter to My Son


Dear Marvin,

Where did the time fly to?  When you came to our home you gave me a new name.  Mama.  I was so excited to have you come be a part of our family.  After years of wanting a wee one and watching friends and family have children I was finally able to have a little one of my own.
You were so little and you were just what our family needed.  You brought laughter, smiles, and mess.   You made our house a home.

Every day we watched you grow and we loved you more and more.  Even though you had a tough start you never let things stop you or slow you down.

Then the day came when you started asking for a "baby scissor",  Dada and I were talking about another child and we weren't sure what we wanted.  When the social worker asked you you didn't hesitate.  You announced you NEEDED a "baby scissor".  And then you looked at her with those baby blue eyes and she told you that you will get one.




When Cary Lynn came home you were so excited.  You put on the roll of big brother like I put on my crocks.  It was a comfortable easy fit for you.  You became Cary Lynn's champion, number one fan, and the way you love and protect her makes me so proud of you.

You changed, just like we all did when she came home.  You knew instinctively that she requires more time and attention.  You have unselfishly given of your time and pitched in when needed. Sometimes I feel terrible that I can't give you my 100% but you never complain.  You just hug me harder.

Every day you grow and change.  We are so proud of you.  This weekend you will turn 8.  I can't wait to see where this year's journey will take us.

I love you more than words can say.  You are my everything and my all.  I am proud of you.

Love,
Your Mama

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Amy Fields is a mama to two special needs kids.  You can follow her on her blog Many Kinds of Families

Saturday, May 2, 2015

Child Whisperers


I am the mother of two child diagnosed with special needs.

But I am not a parent.

Yes, you read that right, I am NOT a parent.

At least not in the ordinary sense of the word.

To me, parenting is about educating your children and providing them with instruction and social conditioning so that one day they may acclimate into the world and conform to what society expects of them.

For a long time that is exactly what I tried to do.

I became a parent like any other and tried to condition my children, to mold them into society.

I pounded and pounded on my square pegs trying to fit them into unaccommodating round holes.

The end result of all this pounding was nothing more than splintered wood.

There was costly damage inflicted upon all of us.


On my journey to raise unique children, I am beginning to believe that I must redefine my ideas about parenting.

Or at least what this role means to me.

Is it my job to mold what is un-moldable?

To search for a "place" for my children that does not exist?

To send them into a world that does not know them?

It all sounds like madness to me.


 And so I search to create my own definition of parenthood.

What does it mean to be a parent of a child diagnosed with special needs?

In this role, when and what am I doing that feels right?

After 16 years of special needs parenting, I can tell you, without a doubt, that it is when I assume the role of an observer that the magic begins.

It is when I watch them.

When I really, really study them, noticing the small things that they do or say that seem to speak so loudly.

Only when I am enlightened, and educated,

am I helpful to my children.

I listen instead of lecture.

It is when I assume a passive role, that I move forward.

In this role, I am not the parent or at least not the one doing the educating.

It is counter intuitive, feeling a lot like parenting in reverse.

But as an observer, I have learned many things from my children.

They seem to know instinctively of life and love and sing of the simple things.

They value things like honesty, love and togetherness.

They possess warm spirits and pure hearts.

Their messages are the medicine the world lacks.


I do not believe my children are alone in this knowledge.

I believe many parents feel similarly.

That our children are trying to tell us something.

But how do children diagnosed with special needs, many who cannot express or speak, communicate these powerful lessons?

I have learned that it is through me.

That this is my job as a parent.

I am not preparing my children for the world

but instead am being conditioned

to prepare the world for them.

To do this, I must not only be an observer of my children, but also a translator for them.

I must take the foreign language my children speak and translate it into English, breaking it down into small understandable parts so others may hear their beautiful songs.

This is my job as a parent.

I am not raising my children.

I am raising the world.....helping it to learn how to see children who are different.

I must teach the world to value these special souls, to accept them, to learn their unusual language.

For their language has a vibration that seems to resonate in those seeking a more meaningful life.

In becoming more loving and accepting of those who are unable to help themselves, perhaps in a way we begin to heal and love ourselves?

Perhaps we begin to heal the world?

I am not a parent.

I am an observer and translator

a teacher

a child whisperer

an awakener of the world.

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

Friday, May 1, 2015

Help with Prescription Medicines for Families




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Family caregivers need to ensure that their children/family member’s medication is given at the right time, right dose, and right route (for example oral, injected, topical.)  Correct management of prescriptions is the biggest influence on preventing hospitalization. 

Tools for Family Caregivers
Organizing medicines can be challenging, especially for parents of children with complex needs.  There are online tools and apps. that list the name of the medicine, what it looks like, which condition it treats, and the time and amount given – all on the same page.  There is even a wallet size option so families can have the list on hand.  Lastly there is a checklist for filling a pill organizer.  There are also printable forms that parents can fill out if they prefer paper copies to apps. or being online.   See Resources at the end for some of these tools, including MyMedSchedule illustration below.
 
What Affects Access to Medications?
1.      Health Literacy
Research has shown that only 1 in 7 people can correctly read a prescription label.  Health literacy is the largest barrier to health care access.  See the diagram below on how to read a medication label.
 
                                                      Photo www.merckengage.com
 
2.      Medicaid
 
Ø  Limit to 30 days’ supply
Family caregivers can order Medicaid prescriptions up to 3 days in advance so if done monthly they won’t run out.  This would also help them have a little extra on hand for emergency preparedness (natural disasters.)
 
Ø  Medicaid as secondary insurance
Family caregivers may erroneously be told they must cover a copay.  Another reason to refill 3 days ahead gives parents time to appeal.  Medicaid should cover the rest after private, and sometimes Medicare, are billed. 
 
Ø  Pharmacy benefits and out-of-state authorization
If a child needs a non-formulary medication while hospitalized, parents may have to fill prescriptions outside of their home state.  However, families can contact their state’s Medicaid office to get reimbursed later.
 
Ø  Having both Medicaid/Medicare (“Dual Eligibles”)
Although there are SNPs (Special Needs Plans) for “dual eligibles”, it could be better to keep Medicaid and Medicare as separate plans due to the pharmacy benefits.    
 
3.      Specialty and/or Compounded Medications
Families need to make sure they know where to get prescriptions filled, if their insurance is accepted, and ask the hospital for an emergency supply.  Note:  some hospitals will forward a special formula to local chains if they agree to fill it. 
 
4.      Mailed medications/special storing
Some pharmacies will agree to have mailed medications delivered and held for families, which helps if a child has many emergency visits and a family may not be at home for the package.  If families can’t afford emergency generators for refrigerated medicines, parents can also ask a local fire department if they can store medicines there in a power outage. 
 
5.      Financial problems
Family caregivers shouldn’t try to make medication last longer by lowering a dose because it may not work as well or at all.  Help paying for medicines is available to families (see Resources.) 
 
 
Family caregivers can overcome obstacles to getting medications which will lessen stress on parents, and keep their child with a disability healthier.
 
Resources:
Organizers:
-MyMedSchedule (online/app.)
 
-My Medicine Record free printable form
 
 Help paying for prescriptions
-Partnership for Prescription Assistance
 
-Pfizer Pathways (includes non-Pfizer medications)
 
Medical Prescription Tips for families
 
 Statewide Parent Advocacy factsheet
 
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.

Saturday, April 11, 2015

Fortune's Wheel

Once in awhile I dream this fantastic dream.  It's spring and I'm in the park with my kids.  We are on a grassy hill.  There is sunshine, trees, and butterflies.  I am sitting on a bench talking to an unknown person.  In my dream I know them.  As we talk I watch both kids play.  The part of the dream that takes my breath away is that there are no AFOs. No wheelchairs.  Cary Lynn runs strong and free. There has been no abuse.  Both of my children are healed, happy and whole.

Sometimes when I talk to this stranger I complain about how hard things are.  Then the person asks me, "Do you want your children well."  I grow silent and don't answer.

Then I wake up.  I wake up to doctors, therapies, wheelchairs, ptsd, and those horrible Afos.

The question is simple, but at the same time a loaded gun.  You would think that any sane parent would say "YES!!  I want them well!" But for me it just isn't a black and white question.  It's so many shades of grey.

First of all, I do wish they hadn't been abused, neglected, and suffered.  I get weary of fighting the world around me for services, going to doctors, and instead of medicines, sensory diets, standers, and medical paperwork that has taken over my craft area. I want my days to revolve around stories, cuddles, giggles, Barbies, and trucks.  I want to call my friends up and instead of discussing Cary Lynn's latest medicines and Marvin's latest therapy talk about what I watched on TV, or what I saw the neighbor doing (probably not, we live in the country and have so many trees that if the neighbors were doing something good, I'd never catch it).

But here is the tricky part.  If you spend your whole life yearning for what you don't have you miss what you do have.

If my children were "well" they would never be mine.  They entered into the system because they weren't cared for.  I would have no Marvin or Cary Lynn.  They would belong to another and that alone chokes me up because this house would be so empty and lonely without them.

If my children were "well" I wouldn't have gotten to know the strong community of women who stand by me.  These women are amazing and their kids are amazing too.  Our children have brought out the best in us.

In my life and travels I have talked with many adults with disabilities.  They inspire me.  Sometimes I get brave and ask the question.  About being "normal and well".  Guess what their answer is nine times out of ten?

No.  Yup you heard me.  So then I ask why?  And they look at me like I've grown two heads.  I get responses and this is a compilation of what is said.

"Yes, some days we do want to do what everyone else does.  It would make life easier.  But they learned that they had so much to offer.  That they could push boundaries, fight for equality, and most of all teach us that just because you are disabled doesn't mean that you you don't have things to offer or that the gifts you have are inferior.  That diversity is the spice of life.  And that we all matter. "

Plus, what dawned on me is if I also spend time wishing my kids well I send a silent message that what they are now isn't good enough.  While I firmly believe that we can work harder to be better people, I don't want my kids to feel like they don't measure up.  Because they do.

I say it often and I mean it.  My kids are amazing.  And they have so much to offer the world.  And they matter to the people around them.  And to me.  So even though I'll probably never call with good gossip about the neighbors I will enjoy the two precious lives that I have and celebrate who they are as is.



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Amy Fields is a wife and mother to two special needs children.  You can follow her at her blog Many Kinds of Families

Wednesday, April 1, 2015

“Knowing What to Say When Your Child is Seriously Ill”




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The Conversation Project has developed the “Pediatric Starter Kit:  Having the Conversation with Your Seriously Ill Child” which is helpful to both parents and professionals.  This kit covers what families can say when their child is very ill, and how to answer their child’s questions.  It is broken down into sections:  “Get Ready”, “Get Set”, and “Go”, and “Keep Going.”  Although it may be difficult to think about, this is an important resource which is helpful to families because this is a conversation that needs to happen. 

“Get Ready”
This section is on preparation.  One of the main questions is, “Is it better for my child not to know how sick he or she is?”  This is a question which depends upon the age or level of understanding of the child.  It is assuring to parents that “It’s okay to ‘go there.’”  Interestingly, it is noted that while families are trying to protect their children, children are often also trying to protect their parents!  The parent quotes throughout the article raise awareness of the issue.  One parent states that children “sort of already know the answer.”  Two key points included, “Children often sense that they’re dying even if nobody is talking about it,” and “Talking about death will not hasten it.”  Of course, each family has to determine how they feel about raising the issue of death with their child, because they don’t want to give up hope, or have their child give up hope, too soon.   

“Get Set”
This section is on how to start the conversation.  Some good suggestions for hospitalized children include having a “favorite stuffed animal…piece of clothing…picture of a favorite place.”  Comfort items are always a good idea and, if allowed, decorating the hospital room with pictures.  We even made a “garden” on the windows of each room in which we stayed at Children’s Hospital using window markers. 

Some parents may be troubled by specific examples in the book.  For example, one parent told her child, “I think you’re right” when he said that he did not think the doctors would be able to cure him.  Some parents may prefer to respond, “You could be right” in that situation, which would still validate the child’s response but in a gentler and less definite way.  Some parents may question whether statements such as, “The doctor doesn’t think there’s any more medicine to make your cancer go away” take away their child’s hope, while others may feel that honesty in this situation helps both the child and the family prepare for the child’s death. 

Supporting children’s choices is important and the suggestion to post something for the care team is a great idea such as, “Please don’t stand around my hospital bed and talk about me as if I weren’t there.”  Families can ask staff like social workers for advice.  There is a way of saying things being truthful but not "brutally honest."  For example, pediatric transplant coordinators will tell patients that the medicine will help with pain, not that it will cure them, if they are terminally ill.

 


Go
This section is about actually having “the” conversation.  It is emphasized that parents must ensure that their “child’s wishes are respected.”  This is vitally important no matter what happens.  Once families ask social workers for help and know how to proceed, they need to address the concerns of their children.  Many children’s hospitals have Child Life specialists that explain medical procedures to children, sometimes using tools such as puppets.  It is also important that the child’s choices do not interfere with medical care.  Sometimes children may have to go through uncomfortable procedures but there may be things to help such as numbing cream for IVs/labwork. 

Keep Going
This section covers how to continue the conversation.  Families can ask children, “Do you think you’re dying?” or “What makes you think about that?”  Child-led discussions are best.  An excellent suggestion from a parent was saying “the doctors are going to continue to try their very best to find a cure, they will never stop, but they may not be able to find a cure in time to beat this disease.”  This is a better approach as it is more realistic but doesn't give up hope.  Research has indicated that even when patients were anesthetized, they internalized what was said during surgery and it affected outcomes.  In discussing siblings, it states, “Each child within each age group will have a different understanding of what death is.”  This is true of the affected child, too.

One parent commented that what “would be a good death isn’t necessarily the same for all parents.”   Providers also need to be aware of the cultural differences when serving diverse families.  Lastly, there is a list of resources for families.  However, one important resource that is missing is Compassionate Friends which supports families after the loss of a child; local groups are found at www.compassionatefriends.org/Find_Support/Chapters/Chapter_Locator.aspx.  Generally, this is a very good resource for parents in an extremely difficult situation.   

In conclusion, these are important conversations that families must consider how to have with their children.  But how it is approached is a personal decision made by each family. 

A version of this article was also recently published by Exceptional Parent magazine www.eparent.com.

Resources:
Review of Pediatric Starter Kit

Link to Pediatric Starter Kit
 

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.

 

Thursday, March 26, 2015

Phone Trouble

I am not a stupid woman.

In fact, when it comes to grasping some of the more complex issues related to Prader Willi Syndrome, I think I've done alright. I understand the role of the hypothalamus and its effect on my youngest son's appetite. I can describe, in excruciating detail, the genetic malfunction that occurs on the 15th chromosome to cause this rare disease.

Why is it then that I have such trouble understanding my eldest son?

When it comes to Weston, I am lost.......but good.

I admit it.

I am not always adept at decoding behaviors associated with autism, Asperger's or ADHD. It is as if he speaks a different language.

I believe Weston is describing me correctly when he refers to me as his clueless mother. I struggle to catch on.

There are some things I DO understand about Weston.

He is kind, curious, observant and quick. He is NOT quiet.

To say that Weston likes to talk is perhaps an understatement. Comments, questions, thoughts and ideas, spill continuously from his mouth. Like machine gun fire that sprays a wall, fleeting thoughts spring immediately to life on the lips of my loquacious lad.

If he thinks it, he will say it.

Unrepressed self expression is indeed his fervent forte.

So why is it then, that he is deathly afraid of speaking on the telephone?

"Nooooooooo...! Mom don't make me do it!" he screams as I hand him the telephone.

Horror stricken, he places his hands tightly over his mouth and back peddles away from me. To him, it is if I have suddenly transformed into the gruesome Freddie Krueger, snarling and slashing at him with my metal claw and equally-chilling evil speaking device.

image by Micro Chen

"But Weston," I plead. "It's grandpa on the phone. You haven't spoken with him for a long time. He misses you and would like to speak with you just for a minute, "

I gently extend the phone toward my timid teen.

"No, Mom, I can't!" he cries and races from the room.

What on earth did I do to provoke such a frightened response, I wonder?

I am perplexed and explain to the bewildered grandpa that Weston is still not ready to speak on the telephone.

I have had many long, gentle discussions with my terrified teen in an effort to understand the exact cause of his telephone anxiety. His answer is always the same.

"I don't know Mom, I just do."

This from the child who entered the world with an innate understanding of electronic devices and Gameboy gadgetry. Cleverly conquering the controls of his favorite video pastime equipment. I incorrectly assumed that smartphone technology would hold a similar allure to this tech savvy teen.

Alas, I was wrong. And so, as a family we are working together to help Weston to overcome this fear.

He is taking some small steps and making some short telephone conversations that he doesn't seem to mind, like calling a familiar restaurant when it is time to order pizza. He is calling 411 when we need a telephone number. He is answering the phone when telemarketers ring, kindly reminding them to remove our number from their list.

All of these activities used to help slowly nurture his confidence.

He is building his endurance and trying to create his own unique telephone persona.
He is discovering who he is.
He is facing his fear.

He has helped me to realize that I may never know what motivates or inhibits others. Perhaps it is best for me simply to accept folks as they are, to embrace quirkiness and acknowledge I do not always need to understand.



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

Tuesday, March 10, 2015

The Disney Top Ten


The week we had been waiting for so long has come and gone.  And it was probably the most amazing week of my life!  We were granted an amazing opportunity to go to Disney World and stay at Give Kids the World Village.  Thanks to an organization that you have heard me mention quite a bit Baking Memories For Kids.  If you haven't been following me you can learn more about them here.  They are sending families with children with life threatening conditions to Disney one cookie at a time:).  Check them out and support them!

While we were there Give Kids the World Village made sure that we were well cared for.  I'm the first to say that I'm not the easiest person to feed since being on the fodmap diet.  But they managed to cater to Marvin and my food restrictions and that was just the tip of the iceberg.  This village rocks!!  To learn more about the village and the families they support click here.

I could spend most of this post going in 2,000 different directions.  But I don't think you want to read war and peace ala blog style.  So I really thought about what I wanted to say. I managed to compress this into a top ten list of things I learned, re-learned, and truths that hit home during this trip. It's still a bit of a read, so sit back, grab your favorite beverage and let's start!

10.  Sometimes it's best to sit back and enjoy where the journey takes you just as much as the destination. 

This one is hard for me at times.  We were originally scheduled to fly but due to my daughter not being able to sit by herself the airline told us they couldn't transport us.  After being grumpy for about 10 minutes we decided to drive it.  It was the best possible decision.  First of all on the way down I got to meet one of my all time favorite writers, Amy Clipston
 It was an honor to meet her and spend time with her!  Plus I got books!!  Yay!!!  On the way home we stopped at South of the Border.  It is between the North and South Carolina border.



It had tons of buildings with stuff to do including hats around the world.

Yes, my son is under there.  We also spent time at the largest indoor reptile exhibit (according to them) in the US.
Sorry, it was humid in there but there were some really up close reptiles.  These are things we would have missed flying.

9.  While people can be wasting time on trivial life events they can miss important things. 

You want to know what was the main topic on my news feed this past week?  Yoga pants.  Yup. People going on and on about wearing them, their husbands forbidding them, and the big debate on them.  It was ridiculous.  But when we let these things consume our time and energy we miss important things.  Case in point as I was standing in line waiting to ride on cars  with my son there was a giant group of children.  I had the honor of meeting a little girl who was battling cancer.  Her name was Molly and she has leukemia.  This is her third time fighting that horrible disease.  But she was all smiles as she got ready to board that car.  The man at the gate offered her encouragement telling her she would kick cancer's butt.  All the children there were amazing and I was blown away. There are so many things out there that really are news and we just miss them because we are so focused on trivial.

8.  Even though there are some really rotten people out there the world is still full of caring wonderful people.  

It wasn't all roses on the trip.  When we were at Animal Kingdom my daughter decided to have a blowout.  My husband went to change her and while he was in the family bathroom this woman decided she didn't want to wait her turn.  She banged on the door, yelled and then called in a Disney employee to kick my husband out.  It wasn't fun.  But the Disney guy was awesome and told her to wait.  We also had an employee at Lego Land ignore us while we waited for a ride in the handicapped spot.  For 15 minutes.

But those were the only two times we had trouble.   The rest of the week was amazing!  The people bent over backwards for our family.  My daughter only had to smile and people showered her with stuff.  Disney employees bent over backwards for us.  We had a special pass that was like a golden ticket.  The characters spent extra time with my children and played with them.  I would have to say I got puddly on many occasions.  The woman in the checkout hugged me and told me I was a good mama.  So despite what we see in the world there are still so many good people left.  It gives me hope.

7.  Being treated like others matters.  

For one week in a village in Florida my kid was treated like every other kid.  No stares, no weird questions about what was wrong with my child.  She was simply Cary Lynn, the child addicted to the carousel ride.  It was day three before it dawned on me that no one asked for diagnosis, doctors, or any of that.  And it was GREAT!  We were just a regular family for that snapshot moment in time.  It made me realize that we have a long way to go back at home.  It will take a lot of work to educate others but it's a job I'm up for.  My child is not defined by her disability.

6.  It's important to let others help you and just BREATHE.  

I'm a person who wants to do everything.  But doing everything by yourself is exhausting.  I don't like help either, but it really is needed.  For one week I didn't carry my tray of food or do much cooking.  The house ran like a well oiled machine and people constantly asked what they could do to help us.  I relaxed and when I let others help, I felt better.  I was able to just love on my babies and let others worry about dishes.  Life gets crazy, but taking advantage of help recharges you.  I feel great after my week and ready to take on what life throws at me!

5.  Special needs parents are rock stars!  

I know this.  I'm surrounded by 200+ women who amaze and inspire me daily.  One of them was on the trip with me.  Our families went together and this woman just amazes everyone who meets her. Amanda Jones has a little one names Allie.  She is also an amazing little girl.  You can follow her journey on Facebook here.

Amanda has had her fair share of challenges thrown her way and is able to rise above them all. While we were on vacation her husband had to be rushed to the hospital (he's doing better now).  He insisted that she not waste a minute of this trip and give his babies their vacation.  I probably would have freaked out and melted.  But Amanda rocked it out.  She took all three of her kids and gave them magical moments that they won't forget.

Amanda and Allie are two amazing people and I am blessed to have them both in my life.

4.  When people come together with a common cause real magic happens.  

A lot of people made this trip happen.  It went so smoothly it was almost like magic.  But the real magic is in the big hearts these people have.  They didn't sit and say "wouldn't it be nice to do something".  They proactively came together and MADE things happen.  From the cookies that were lovingly made with my child in mind to the gifts that magically appeared every day at the village.  I don't think there are enough words to express our families depth of gratitude for every nice thing that was done for us.  Thank you seems so very inadequate.  But everyone of you blessed us this past week in a very special way.  I cried a lot (happy tears so all good!).  The caring touched our hearts and made us feel very cherished.

3.  I can handle what life throws at me. 

I will be the first to admit that I can be a bit of an *ahem* spazz.  But sometimes I get it right.  When we were heading down on the start of our vacation we stopped so I could give Cary Lynn her meds and juice through her g-tube.  I opened up her shirt and realized with a sickening thud that the g-tube was gone.  Just gone.  Also there wasn't much of a hole left.  It was closing.  So we had to act fast.  I promptly had a fit.  Then I got the spare tube out and both Shannon and I went to cram it in.  Not happening.  So after freaking out a bit more we drove to the grocery store so Shannon could run in and grab some lubricant. As I looked at the hole I realized that I needed to buck up and get it done. So I manually stretched the stoma (g-tube hole opening) and managed to cram that puppy in.

Cary Lynn was all smiles and trying to roll through this whole ordeal.  Marvin was a wreck and I thought I was going to puke.  But after I realized what I had done I felt really proud of myself.  I've come along way and I realize that I've gotten much stronger.  I'm pretty proud and whooped it up a bit in the parking lot.

2.  My husband is awesome.  

From coming out of Animal Kingdom covered in poop, running in to get lubricant for the g-tube, and not caring one iota about yoga pants he is simply the best.  Watching the way he interacted with the kids this week and the way he loves his family makes him a keeper in my book.

1. My kids are amazing.  

My kids are my world.  I know they are amazing and I want them to have special moments and memories.  Marvin spent time advocating for himself this week when things were too noisy or when he had enough.  He also spent lots of extra time loving on Cary Lynn.  He is turning into a thoughtful caring young man every day and I'm proud to be his mama.

Cary Lynn is my princess, diva, and fighter.  She never lets life knock her down and has a smile for just about everyone.  She inspires me to try harder and fight for her daily.

Once again to everyone who made this trip happen, thank you.  You have no idea how much this meant to our family.  Or how much of a difference you made.  Or how one little girl is now firmly convinced that she is royalty;).  Getting back to regular might take a bit to get used to:).  But for the smile on her face and for all the magic moments that we were blessed with will be memories that we will treasure forever.

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Amy Fields is a mother to two special needs children and now wants to move in to Cinderella's castle.  You can follow her at Many Kinds of Families.

Tuesday, March 3, 2015

Ye of Little Faith

I have come to believe,
 
that as a parent of children diagnosed with special needs,
 
I have a choice.
 
I can choose to see this life as some form of punishment.
 
I can complain about how tiring and difficult it is
 
or,
 
I can choose to see this life as something special.
 
 
As an opportunity to meet, teach. learn, share and grow with others,
 
to let go of fear
 
to allow things to fall

to embrace chaos

to be present
 
to love unconditionally
 
and unrestrained
 
to have faith in my heart that I am exactly where I am supposed to be,
 
learning,
 
 and doing exactly what I am meant to do,
 
for myself,
 
and others.
 
I have faith.
 
I believe.
 
 
I know what is important.
 
I choose.

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

Sunday, March 1, 2015

Why “Health Passports” are so important for family caregivers of children with disabilities




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A recent article in the Wall Street journal, “Patient ‘Passports’ Make Sure People With Complex Cases Are Heard,” mentioned that, “Like a standard medical record, the patient passport has basic data such as medical diagnosis and prescription drugs. But there are also places where the patients provide the information, such as how they cope with health conditions and the activities they need assistance with, as well as their concerns about being hospitalized and their quality-of-life goals for after discharge. They may request counseling to help deal with illness, understand medical terms or discuss end-of-life care.” 
 
What is a Health Passport?
A Health Passport contains many pieces of health information.  An excellent sample for children with disabilities is “My Health Passport.”  This simple form includes: 

  v  Medical history summary
  v  Medications
  v  Allergies
  v  Pain management
  v  How the Child Communicates
  v  Mobility Needs
  v  Dietary Needs
  v  Ideas for Comfort 
 
How Can a Health Passport Help Children with Special Needs?
The WSJ mentions that in general it helps families communicate with health providers and also reduces the feeling of powerlessness.  This is particularly important for children with special health care needs who may feel they have no control over their own health.  My Health Passport allows the child to either fill out the form, or with help, state his/her likes/dislikes.  It will also reduce behavioral issues which can affect medical care.  For example, my daughter would get so upset during medical procedures in ICU that it affected her heartrate.  So we consulted with her developmental pediatrician and developed a behavioral plan for my daughter who has autism while she was in the hospital with important information that is in her permanent chart.   
 
The Health Passport can even help reduce medical errors, preventable rehospitalization, reduce costs, and most importantly result in better health outcomes for children and youth with special needs.
 
Resources:
Wall Street Journal:  Patient ‘Passports’ Make Sure People With Complex Cases Are Heard” http://www.wsj.com/articles/patient-passports-make-sure-people-with-complex-cases-are-heard-1422918741
My Health Passport
Spanish
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.