The Mother I Became

A few minutes after my son was born I held him in my arms I looked up at my beloved and didn't have the words to express what I was feeling. Just like that, I was a mother.

It was a year before he'd be diagnosed with a vision disorder that caused delays. It would be another two years before his sister would join us and bring a surprise inside her body that she would share with her brother. It would be then that we would learn they both had Autosomal Recessive Polycystic Kidney Disease, or ARPKD. 

Motherhood was an adjustment, as you might imagine. I'd like to think I'd handled it pretty well in those early days. Two years before my son was born I'd begun freelancing, anticipating staying home with a baby and I worked nearly full-time until he was born. I'd nursed exclusively, he was a good sleeper (undiagnosed kidney disease anyone?) and I felt competent. We did okay, the two of us.

Fast forward a couple of years and within 3 months we had two sick kids with multiple special needs to take care of that resulted in an unbelievable amount of appointments for the next year because blood pressure stabilization and 10-13 (ot, pt, speech, vision & feeding) therapy visits a week.

It was a terrible time of adjustment for me but as I just put one foot in front of another a transformation happened. As I was caring for them and their complicated needs I started to change.

I became an advocate.

A caregiver, tear wiper.

I became a story teller, a schedule keeper.

A comforter and soul protector.

I became a researcher and juggler. A medical aide and fighter.

Pill dispenser. A shot giver.

A volunteer, a speaker.

I became fearless and fearful.

I became a better daughter, sister, mother. A better friend.

I became a better wife.

I became more grateful.

I became a better person.

I became the mother I am today.

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Julia Roberts is co-founder of Support for Special Needs.com and until late last year was the writer of the blog Kidneys & Eyes. She lives in Atlanta with her husband Julian (yeah, the name thing is a bit much for them, too.) and kids, who have both had kidney transplants, will need liver transplants and are thriving at a school for kids with learning differences. She survives by laughing at her life and regular infusions of Diet Coke. 

Hope for Humanity

I got this email from my dear friend, Kathleen. Kathleen's niece, Jane, is a senior in high school in California:

"Emma and Garrett are a super popular, super athletic couple.  Garrett has been friends with Jane since they were both babies. Garrett has four adopted siblings all with special needs including a brother with Down syndrome.  Emma became Jane's friend freshman year in HS and is her peer mentor this year. Jane adores them both.

Jane has never gone to a dance.  She has wanted to in the worst way, but is afraid of the whole dating thing.  Emma and Garrett hatched this awesome plan on their own.  They knew that Jane would totally be comfortable going with the two of them so they asked her to be their date to prom.  They showed up with a banner at her baseball game yesterday.  Just this kind of role modeling among their high school peers will be incredibly powerful.   

So, Jane is going to her first and last dance with her two favorite friends...And Emma and Garrett, well, they just changed their little corner of the world."

I am hopeful that next year, when Wil is a senior, somehow, some way, he'll be able to go to his senior prom. I am hopeful that there can be creative, caring, compassionate, fun alternatives for lots of kids that may not otherwise have this experience. I am hopeful that the world is not going to hell in a hand basket.

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

Happy Mother's Day

Seven years.  A life can change so much in that time.  People are born, change jobs, move, loose massive amounts of socks in the dryer, and the cycle starts all over again.

I wanted children.  From the day I said I do with my husband I wanted a house full of little people.  But the years passed and the children never came.

Then came the miscarriages.  One after another.  I was devastated.  Crushed.  Miserable.

I had always wanted to adopt.  I was adopted.  It meant a lot to me.  We started the process when we lived in Florida.  Just as we were approved to adopt we moved to Virginia.  Then we found out we had to start the process all over again (don't ask, I still get mad thinking about it).

It was hard watching everyone around me get pregnant.  When my sister in law told us I was thrilled for her but so incredibly upset for me.  I cried for days.

Then when we were all ready to adopt a sibling group a judge decided that they needed to stay in foster care.  I was even more upset.  I had had enough.

Two days later I got a call from a social worker.  She had a little boy with Shaken Baby Syndrome who was born met addicted.  She thought we were the perfect match.  But I was tired.  Battle weary.  I just couldn't.  I told her everything I went through.  I told her I just couldn't take it anymore.  She paused.  Then she said, "Mrs. Fields, the reason you haven't gotten any of those children is that you were meant to be Marvin's mama."  I held on to that promise.  A few weeks later a blond haired, blue eyed pudge ball changed me forever.

I became Marvin's mama.  I was amazed, in love, and felt terribly unprepared.  I couldn't even balance a checkbook, remember my coat on cold days, and had the attention span of a gnat.  They were entrusting me with a little human being.  But together we grew and I loved every minute of it.

Then a couple of years ago we did our second special needs adoption and our daughter came to live with us. She has more medical issues than a bad episode of General Hospital but once again I knew that I was meant to be Cary Lynn's mama.

It isn't always easy.  I've had to become a nurse, doctor, psychiatrist, and give up so much.  But for all I've given up I gotten so much more.  My life is a better place.  I'm stronger than I though I could be, more determined, and just so blessed.

It isn't always great.  It's sometimes hard and I wish that my kids could have less problems and be more like everyone else.

But I am always in awe and never forget what it was like seven years before.  How empty my life was.  How much better it is now.  How I now have everything I have ever wanted.

Happy Mother's Day.
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Amy Fields is a proud mommy and wife.  You can find her over at her blog Many Kinds of Families.  

How Family Caregivers can get the Most out of their Insurance Coverage

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Family caregivers are concerned not only with the worry if their loved one is getting the best medical care, but also the financial burden associated with it.  According to Families USA, 60% of all bankruptcies are due to medical debt.  Family caregivers need to know how they can maximize their insurance to lower their costs.   

Don’t take “NO” for an answer

Families have a right to appeal claims that are denied by insurance.  There are different ways to do this based on the type of plan.  All plans come with handbooks explaining this process, whether it’s a public or private plan.  Only 1/3 of families appeal a claim when it’s denied, but half of the time it’s turned around on the first try.  For private plans, it may be something as simple as sending the “explanation of benefits” on why it was denied, along with any missing information requested, and a doctor’s note of medical necessity.  Parents should keep copies of everything, send it certified/return receipt, and follow-up if needed since there may be a deadline on the appeal.  It may be a good idea to send a copy to your state insurance commissioner (see resources); even if the plan is “self-funded/self-insured” and is exempt from state regulation due to ERISA (Employee Retirement Income Security Act), these are the same plans that go for the Medicaid contracts in your state and they don’t want to look bad.  Again, there may be both internal and external appeals, and families need to check the process in their plan handbook. 

New Benefits under the Affordable Care Act

Besides not being able to drop plans due to illness or deny due to “preexisting condition”, there are now no lifetime caps on benefits and children can stay on a parent’s plan until age 26.  It should be easier for families to get mental health care due to the new federal parity law which requires equal treatment for mental and physical health as well as autism coverage under one of the essential health benefits of “behavioral health.”  Qualified health plans in the Marketplace also have to cover children’s dental and vision care.  Prevention and wellness care is at no charge.

What is Coordination of Benefits?

Families of children with special needs may have more than one insurance plan.  Children with disabilities may have private plans as well as public plans like Medicaid or Medicare.  The private plan usually pays first, and the public plan pays the rest.  But families still may have to remind doctors and pharmacies that they need to bill both so families don’t end up paying out-of-pocket.  Other helpful tips:

Ø  If a family has Medicaid as the second insurance but the provider doesn’t take Medicaid, the provider can call the HMO and ask what the process is to bill Medicaid “out-of-network” as the secondary.

Ø  If a family has Medicare and the doctor doesn’t take Medicare, the provider can send in his/her Medicare opt-out letter with the bill to the private insurance.  Families can also file Medicare claims in this manner.

There is a factsheet on how to get the different types of insurance and how to coordinate benefits at

 http://www.spanadvocacy.org/content/coordination-benefits-having-more-one-insurance-plan or Spanish at http://www.spanadvocacy.org/content/coordinacion-de-beneficios-tener-mas-de-un-plan-de-seguro.

                        

Family caregivers need to get the most out their insurance which will help ease any financial strain on families.  Below are resources that can assist if families need more help.

 

Resources

The Arc

http://www.thearc.org/find-a-chapter

 

Families USA

http://familiesusa.org/issues

 

 

Family Voices/Family-to-Family Health Information Centers

http://www.familyvoices.org/states

 

SHIP Counselors (Medicare)

https://shipnpr.shiptalk.org/findcounselor.aspx

State Departments of Insurance-National Association of Insurance Commissioners

http://www.naic.org/state_web_map.htm

Title V of the Maternal/Child Health Bureau

http://mchb.hrsa.gov/programs/titlevgrants/

 

 

 

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