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.
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 

Sunday, December 28, 2014

The Mad Scientist

My two boys are SpongeBob SquarePants fanatics.

They are maniacal about their obsession.

The dinner table is often the preferred arena for reciting lines from their favorite episodes.

This year, their bizarre behavior did not escaped the careful eye of Jolly Ole Saint Nicholas. So, the ever omniscient observer in the bright red suit, brought them this ingenious invention:

A life-like representation of Bikini Bottom

We had a blast setting up the "absorbent-and-yellow-and-porous is he, pineapple-under-the-sea" aquarium. It was very inexpensive and came with everything, except the fish. The boys loved it. It seemed to be, by far, one of my better finds for a cool and care-free Christmas present.

Or was it?

Yes, dear readers, I am sorry to report, this ingenious idea may not have been such a clever one after all. Let me explain.

When I was a kid, I took a trip to our local fair and won a fish from successfully throwing a ping pong ball into a small goldfish bowl. You may remember the game?


But the thrill of my victory was short-lived and poor Romeo was kept in his glass bowl where rarely, if ever, his water was changed. Despite a few failed attempts at "jumping-out-of-the-bowl" suicide, he was indestructible, living for many years, in stagnant and murky water.

 Perhaps it was the memory of that hardy, low-maintenance fish that made me believe an aquarium would be a more humane and easier environment to keep clean and display a few furless, finned friends.

I was wrong.

It appears that I am aquatically ignorant.

With the introduction of our new aquarium, I  have transformed into nothing short of a mad scientist.


Who knew, there were things like ammonia, nitrates and chlorine levels that need checking. Who knew that cycling a fish tank is the first step in preventing what's called New Tank Syndrome, a toxic form of cloudy water that can kill a fish as fast as you can say "love that dirty water"!

I have been doing my best to perform test samples of the water, checking the pH and ammonia levels. I have made frequent water changes. I have mixed unusual concoctions of powders, liquids and noxious chemicals. All of this to ensure a crystal clear environment that promotes the favorable well-being of our newest family member.

I have become obsessed.

My new lifestyle caring for this aquarium has become like a new mission in life for me, a lifelike microcosm and all-too-familiar representation of the role I play every day in caring for my children.

What on earth was I thinking?

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

Wishing you all a very happy and healthy New Year!

Thursday, December 11, 2014

Baking Memories 4 Kids

I've had a secret!!   A big one!!!  And I managed to keep it from the kids and that is a pretty darn near unqualified miracle around here.

Let me backtrack a bit.  To about the summer/ fall before.  Our family was nominated by another awesome family for a trip to Disney World.  This trip is expenses paid and we stay in the Give the Kids the World Village.  It is an amazing opportunity and a very big blessing for our family.

Baking Memories 4 Kids is non profit and is an awesome organization.  You can lean all about them by clicking here.  They are also on Facebook and you can find them and like them there.

So how do they send kids and their families on these trips.  By baking cookies.  And they are darn good cookies!  So good this gluten free lady committed a big no no and ate one (or two I'm not telling!!).  They are yummy, home made, and every container of cookies people buy help send families with terminally ill children or children with life threatening medical conditions to Disney.

We are excited to go.  We go in February.  Today was the big reveal.  We were allowed to invite friends, family, and the mail man (she was busy though lol) to Panera in Charlottesville.  They have been so amazing in supporting Baking Memories and hosted our reveal party today.  They also gave us lots of yummy food!  Always a plus in my book!!

We arrived at the Panera and Frank was already there with the news!  We got to be TV stars:).  I don't think Marvin quite realized what was going on at first since I told him we were taking a day to celebrate my birthday and meeting our cousins.  Even bumping into my two friends didn't tip him off. Now that full realization has sunk in he's making plans on what he is going to do (and Amanda, I'm sorry to say he doesn't want to ride an alligator.  He's worried it will eat him, lol).  Here are some pictures of our day!


Here we are with Frank.  He lives to surprise the kiddos!!  It was worth keeping the secret for so long to see the look on their faces!!

Cary Lynn, the star of the show, got plenty of attention.  Amanda, my friend, whose family is going with ours the same week loves my little girl.  And Cary Lynn loves Amanda.  Just mentioning her name brings smiles to my little girl's face and that means a lot to this mama.  Grandma also got lots of cuddles too!  For a little girl who spent so much of the beginnings of her life in a sterile hospital with not a lot of attention she makes sure she gets it now!
Marvin is hanging out by the camera.  My little man who is so charismatic in small groups was a bit overwhelmed today with all the attention, but he did great!

I love my kids.  This vacation is a chance for our family to live a normal life for one week.  One that doesn't involve doctors, therapies, and all that jazz.  For a family like ours these moments are precious.  Because we don't know what's going to happen in the future.  Every moment we can spend together is precious and when you live with a medically fragile child it's something you don't take for granted.

Thank you Baking Memories 4 Kids.  You have given us an amazing gift.  I'm so grateful for this chance and we are so ready for this trip.  Marvin is packing a backpack as I write this:).  We are ready and so excited!  Thank you seems inadequate but you will never know how much this means to us!!  Look out Disney, here we come!!


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Amy Fields is ready for Disney!!!  While she is waiting you can follow her on her blog Many Kinds of Families.

Monday, December 1, 2014

Why having accurate medical records is important for family caregivers




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Parents need to make sure that the details of medical events occurring for their child with special needs are correct.  This is particularly important during hospitalizations, when changing health care providers, or transitioning to adult health care.   

How to keep records
Parents should keep brief notes of visits and especially bring a small spiral notebook or online if they have access during hospitalization.  They should also get “clinical summaries” after appointments and have their child’s PCP (primary care physician such as a pediatrician) copied.  Family caregivers can request copies of other records, such as hospitalization, from the department that cared for their child such as gastroenterology etc.  If the child has complex needs, families may have to get records from each department.  In addition, parents can request results of testing such as x-rays from radiology and any procedures from surgery.  It is important when getting surgical records to also request pathology reports (results.)  It may also be a good idea for the child to wear a medical id bracelet that has all of their basic information on a flash drive.
 



 
 Photo www.nymetroparents.com 
 
Making sure records are correct
Parents can compare the doctor’s notes with their own.  It is vital that any major events such as “coding” and needing to be resuscitated are documented correctly.  Correct records will result in better care and inaccurate records can have negative implications. 
What to do if records are inaccurate
Families can discuss the record with the appropriate department that treated the child.  Sometimes, older records can’t be changed in the computer system.  However, parents can ask to have the record “amended” which means an additional note will be attached to the record to clear up any confusion.  Families should request a copy of this additional record in writing.  They can use this not only for their child’s medical history file but also for new health care providers who are just learning about their child.
 
 

 
Photo www.venturebeat.com                          
 
      
Why good medical records are so important
Inaccurate medical records can adversely affect a child’s health care.  For example, pulmonologists and neurologists would need to know if a child went into respiratory distress during a seizure.  Nursing staff would need to know of infections that the child acquired in the hospital such as urinary tract or c-dif (clostridium difficile) infections to which the child wouldn’t otherwise be susceptible, and take precautions.  Surgeons and anesthesiologists would need to know if a child had to be reintubated with a breathing tube after a procedure.  When children are have complex needs or are hospitalized, they may have many providers, so these details will help prevent adverse events. 
Families can ensure that the medical information being shared about their child is correct.  This will result in better health care and better outcomes for their child.  
 
Resources 
American Academy of Pediatrics-Build Your Own Care Notebook
Washington Department of Health-Care Notebook www.pluk.org/Pubs/CareNotebook_790k.pdf 
For self-advocates - My Health Pocket Guide www.waisman.wisc.edu/cedd/pdfs/products/health/PG.pdf
Helpful Contacts:
Family Voices/ Family-to-Family Health Information Centers
 
 
 
 
 
 
*For more information on this topic, see Reviewing and Amending Medical Records” factsheet from the Statewide Parent Advocacy Network at http://www.spanadvocacy.org/content/reviewing-and-amending-medical-records-fact-sheet.
 
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, November 19, 2014

Pirates of the Parenting World

 
Last week, Weston and I visited with Dr. George, his primary care physician. Dr. George is an important and supportive figure in our lives. He stands beside us and faithfully weathers many of our unusual family crises.

He is a good friend.

Appointments with Dr George are unusual because we do not talk about healthcare alone. We talk about life and Weston's personal well being.

During this appointment, Dr. George decides to address the typical apathy that often defines the attitude of teenage boys toward their mothers. I have written about it many times on my blog. You may remember Weston's OMG, I can't believe I have such a clueless mother mind set.

But today, Dr. G explains to Weston that he is very fortunate to have me as his mother. He tells him I am a pirate.


Describing me as a sword wielding, pistol slinging hellion of the sea, sailing her ship into uncharted territory, thwarting the efforts of the established regime whose misguided objective is to subdue Weston's fiery spirit.

Weston smiles just a little, picturing his mother in this devilish light. I am a little surprised too by this comparison since I usually see myself as a type of law-abiding and revoltingly accommodating superwoman. But in thinking about this further, I believe Dr. George is right.

I am like all parents of children diagnosed with special needs, I am a pirate of the parenting world.


When you think about it, special needs parenting is not about following the rules, and obeying the laws, it's about breaking them. It's about questioning authority and pushing boundaries, aligning yourself with rebellious others, instilling fear and awakening the imprisoned hearts of a blind and passive public.

It's about commandeering a group of misunderstood misfits through dangerous waters and fighting aggressively to fulfill the selfish needs of these brave and ragged few.

It is a difficult lifestyle filled with danger and adventure, a series of intense battles interspersed with a few welcomed reprieves.

It's about mastering weaponry and finding the fire in your soul to fight bravely to the death.


You care little for what others think and find amusement in the fear you provoke in others.

But there is also an unusual kind of duality associated with being a pirate.

A certain code among thieves.

A need for being as civil as you are savage,

as cooperative as you are querulous

and as disciplined as you are unruly.

You are a master of the mundane and a survivor of storm.

You trust no one.

You sail alone, always adrift, and even among fellow pirates you find few friends. Similar spirited temperaments and accompanying bravado create frequent dispute and deadly skirmishes among pirates.

And yet with these unique few, brilliant seamanship can occur with the precise timing, execution, skill and camaraderie that builds over the many years of serving and sailing together.


But perhaps most importantly, is the indestructible energy force behind all of these dastardly deeds.

The motivating drive behind all acts of piracy and rebellion,

The burning and intense desire to seek a treasure whose worth is immeasurable.


Yo ho, yo ho, it's a pirate's life for me.



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