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.
 
  
 
 
 

Thursday, February 12, 2015

Trauma Woes

I admit it, I hate trauma.

It colors everything you do and tips your world upside down.  It takes your soul and leaves it battered and scarred.

Last week Marvin had a huge trigger episode.  Normally we know when they are coming and can head them off at the pass.  This time it snuck up on us like a thief in the night.

We were getting ready for bed.  The rage came without warning and we lost our happy little boy.  For about an hour,  He was so angry and discombobulated.  All we could do is hold him tight, rock and soothe him.  We called his therapist at 8pm.  We racked our brains afterwards.  We couldn't think of anything.  I cried all night long.  I cried because it isn't fair.  I cried because it isn't right.  I cried because once again my child had a memory trigger and had to relive horrific abuse.

Normally he bounces back.  This time has been different.  He and I spent the weekend sick on the sofa.  This week he has clung to me.  I can't even go to the bathroom without him hanging outside the door.  I realize as a mom that you give up the right to pee privately anyway, but still this has been different.

We realize that he has a lot going on.  We have a once in a lifetime trip to Disney coming up!  While most kids are over the moon the trauma child's voice echos "Will I be safe?  Will you take care of me?"  He will be excited once we get there and he gets involved.  I know my boy.  But right now it is one anxiety after another.  Will there be bathrooms?  What if there are bad people there?  What if something happens to our car?  What if a shark eats us on the way down?  Even the silly becomes something to be feared.

I have to remind myself how far he's come when things go bad.  I remember when it used to be a struggle to get him to preschool.  How when we got there he spent some days unhappy and the car rides home screaming that he was never going back.  It took a lot of work and therapy to discover that he didn't like that I was the teacher and leader and when he misbehaved guess who he got sent to? Now mind you I'm not a horrible person.  Most kids enjoyed having extra teacher time.  We put a few works back on the shelf, rolled some rugs, looked at a book.  Come on, this is some serious individualized attention.  I swear I had one child who made it their mission to see me everyday:).  But for Marvin it was more of an issue. For him it was the fact that he was "in trouble" with mom.  And moms aren't safe people.  They hurt their children.  Over and over again.  If I could go back and have a do over I would have insisted that we did it differently.  But I didn't know.  So we muddled through the best we could.

Now he enjoys school.  And he realizes that yes, mom gets flustered, but mom is safe.  Mom cuddles, tussles, plays, and most of all loves her kids.  With all her being.

But to be hit with this storm last week was hard.  It was watching everything I worked so hard for be unravelled right in front of my eyes.  His therapist called it pre-verbal trauma.  In a nutshell something happened to Marvin when he was a tiny bean that was so horrifically bad that it was repressed until now.  We did everything right.  We met him at the level he was at.  What hurts is that whatever demon it was may be back again.

So this week I feel like I've been on eggshells.  I've kept my voice quieter.  Sharp words that form on my tongue have been stifled.  Lots of cuddles, hugs, books, songs, and whispers.  Whispers that say, you are safe.  You are loved.  Nothing is going to happen to you.

He's finally coming around and I feel like I've battled a tiger.  And I'm not quite sure who won.  But I know this.  Marvin is safe, he is loved so very much.  And if he can't believe it right now I'll just believe harder for the two of us.  Because I'm his mom and his sanctuary.  And I also know that he's a survivor.  And whatever the trauma or the storm we will meet it head on and together.




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Amy Fields is a mother of two special needs children and is getting a much needed break in Florida.  You can follow her on her blog Many Kinds of Families

Sunday, February 1, 2015

How the ABLE Act can help family caregivers of children with special needs




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Recently, the President signed the ABLE (Achieving a Better Life Experience) Act.  This will help parents of children with disabilities to be allowed to save funds for their child without risking the loss of benefits. 

How it Works
The ABLE Act uses plans that are similar to a 529 savings plan used for college.  Some families already have “special needs trusts’ which are used in the same way.  Typically families were only allowed to have up to $2000 in assets in their child’s name, or the child would lose eligibility for Medicaid and/or SSI (Supplemental Security Income.)  The ABLE Act allows families to deposit up to $14,000 yearly, for a total of $100,000 savings without affecting benefits.  Extended family members, friends, and the person with a disability would also be able to contribute funds to the plan.  Income earned by the account, and contributions to the account, would not be taxable.  The total annual contributions to any such account are $14,000. 

Who is Eligible
People with disabilities are eligible if they have a condition that occurred prior to age 26. In addition, the individual must meet the eligibility criteria for SSI or SSDI (Social Security Disability Insurance.)  Please note that there can only be one ABLE account in the individual’s name.  It is also possible to have both a special needs trust and an ABLE account.  Please also see the Exceptional Parent magazine link below which discusses the interaction between ABLE and Medicaid. 

What Families Need to Know-Next Steps
It is possible that ABLE accounts could be open this year.  However, states need to develop regulations.  To encourage quick action, parents should contact the Governor in their state found at http://www.nga.org/cms/home/governors/staff-directories--contact-infor/col2-content/governors-office-addresses-and-w.html.   

The ABLE Act will prevent children with disabilities from having to live in poverty in order to maintain benefits such as Medicaid and SSI.  Now, families can save for their child’s future.
 

Resources
Disability Scoop-Announcement:


Exceptional Parent magazine-ABLE & special needs trusts


National Disability Institute-Ten Things You Must Know About ABLE Accounts




Questions & Answers About the ABLE Act
http://www.ndss.org/Advocacy/Legislative-Agenda/Creating-an-Economic-Future-for-Individuals-with-Down-Syndrome/Achieving-a-Better-of-Life-Experience-ABLE-Act/
 


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, January 10, 2015

Invisible Solider


Dear Solider,

The other day I saw you at the grocery store.  You were chasing your little one around.  A lot.  You looked tired.

"Travis, put that down!!" "Travis stand still!" "Travis stay here!!!"

Then you turned your back to load your groceries and Travis came up to me.  He held his hands up to me and gave me a hug.  Then he proceeded to load ALL the Hershey Bars in my shopping cart (that's a boy after my own heart).  You turned around looking panicked and opened your mouth to yell, but I stopped you.  "He's here!"

You came over looking frazzled and not really in the holiday spirit.  You opened your mouth to apologize to me.  But then you heard laughter and turned around to see your son tickling my daughter.  In her wheelchair.  Two children.  One with Cerebral Palsy and one with Down Syndrome. Your frown turned into a smile as you recognized another invisible solider.  We chatted and laughed about our kids and you took your son home.  I unloaded all the chocolate and checked out.  Your son brought a smile to my face the rest of the day.

You see, not all soldiers are stationed far away.  There are many you see every day.  We don't fight with gun and grenades.  We are your neighbor or even a member of your family.  We keep in the shadows so we can fight for the most important thing in our lives.  Our children.

We fight our own enemies.  We fight insurance, doctors, therapists, and supply companies.  We fight so our children have access to all they need to help them grow and thrive.  Somedays we even fight the world so they can see how wonderful and amazing we know our children are.

We stand with our troops.  When one of them takes a hit we gather around them.  We offer encouragement, resources, and most of all we pour our hearts and strength  into them so they can stand once again.  We are there for each other.

Happy New Year my troops and my friends.  You have helped me make it through many battles this year and without you I may have been taken prisoner by the enemy of despair.  We have fought long and hard together and I am proud to stand and serve by you all.  May your days be full of hope and victories and your losses be few.  Know that I am there ready and willing and able to battle with you.


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Amy Fields is a mother of two special needs children.  You can follow her journey on her blog, Many Kinds of Families

Thursday, January 1, 2015

“I Need a Break!” – Respite & Other Stress Relievers for Family Caregivers




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Recent research indicates that family caregivers of children with special needs actually have accelerated aging down to the cell level, up to a 10 years difference from other parents.  This is made even more difficult by the fact that children are with disabilities are more likely to be raised by single parents than children without disabilities.  However, there are things that parents can do to preserve their physical, and mental, health.
 

Talking with other Parents
Sometimes speaking with other parents who have “been there” is all that is needed.  The latest study indicates that peer support helps reverse the lengthening of “telomeres” (aging.)  There are support groups as well as “matching” with a trained volunteer parent of a child with the same condition through Parent-to-Parent.  The American Self-Help Clearinghouse lists support groups nationally, including one-to-one telephone assistance (see Resources.)

 
 
 

 
 
 


 Photo www.centrolasamericas.org

 
 
Exercise, Quiet Time, etc.
Parents need to take care of themselves so they can take care of their child.  Sometimes families may be able to involve their child, which is always best if possible, such as going on walks or doing yoga together.  Even if your child doesn’t participate, there may be a way for a parent to try to do healthy things while supervising their child.  For example, sometimes my daughter will play on a videogame while I do exercise videos in the same room.  There’s such a variety such as aerobics, “stepping”, and even walking videos that can be done indoors if the weather is bad.  Or a parent can use a treadmill, exercise bike, or even a simple “pedaler” while their child looks at a book, or watches TV or a video. 
 
Parents may just need some downtime, rather than “doing something.”  Sometimes families can read, do puzzles, etc. alone or together while their child is engaged in another independent activity.  Or sometimes reading to the child, or just being in the same room reading together, is calming.  Music or meditation can also be helpful.  Even if having a “quiet corner” that the parent uses to regroup with candles, aromatherapy, etc., could give the parent the relaxation that s/he needs.  If both parents are present, one parent can watch the child while the other takes a mini-break, even if it’s just for 5 minutes.
 
Respite
Ultimately, parents of children with disabilities may just need to get away for a bit.  Parents have to feel comfortable with the person who will be with their child, so it may be a gradual process.  Families may want to stay home the first time, then increase the time away.  Even a few hours a month is beneficial.  In some states, children with developmental disabilities or other conditions, receive respite services.  The source of respite will differ from state to state.  Many times, the Title V (Maternal/Child Health) Program can give families leads on how to find care.  Family Voices/Family-to-Family Health Information Centers and Parent-to-Parent programs can also give parents helpful resources.  There is also a national respite locator for families (see Resources.) 

There are many ways that parents can de-stress, for either a short time period or hours.  Parents of children with special needs can talk to other families, take care of their physical/mental health, or just get away for a bit and come back refreshed.

Resources

Support groups - American Self-Help Clearinghouse


 
 
 
 
 
 
 
Parent-to-Parent
 



 
 
 

 



Mental Health help
 

 
 




ARCH national respite locator

 






 


 
Helpful Contacts:

 
Title V (Maternal/Child Health)
 
 
 
 
 
Family Voices/Family-to-Family Health Information Centers
 
 
 
 
 
 
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.