Friday, May 31, 2013

Labels (and Round 6)

We just got home from Scarlett's chemo infusion.  Two drugs in, no problem.  It was a relatively fast one - only about 5 hours from starting labs to de-accessing.  She is asleep, and will probably be up half the night wanting some comfort.  The other effects remain to be seen - each cycle has been a little harder than the last, particularly on her stomach.  We're hoping we can manage her nausea with medication for the next two weeks to keep her weight on track and to make her more comfortable.  The older she gets, the more upsetting and disconcerting it is to throw up.  On the flip side, though, we feel like it must be "working" - chemo with no side effects felt too easy, not effective enough.  Quite the double-edged sword there.

While we were in the clinic room, we discussed the newest label we have for Scarlett: Intellectual Disability.  In the old days - and still in many federal, state and other documents - it was termed as "mental retardation".  I'm not sure the change in phrase helps the meaning.

This stems from our ongoing battle to secure medical insurance for Scarlett.  You can read more about our struggle with that here, but here's the basics:  Scarlett has been covered by Medi-cal (California's Medicaid) for a while, thanks to our meager income throughout her first treatments.  She qualified based on her qualification for Supplemental Security Insurance, which is based on our income.  Once I began working again, we no longer qualified, so we need to find a new form of insurance to cover her.  She is impossible to insure without a group plan (where pre-existing conditions are accepted by federal mandate), or by government coverage.  We currently pay for COBRA from Chris' old job at Starbucks because it is nearly half the price of insurance through my school district.

Heck, if I were an insurance company (thank godness I'm not!!), I wouldn't want to take her, either.  Her current chemo, per the EOB's we receive, costs about $25,000 a month (and is not FDA approved for pediatric patients, so is therefore not going to be approved by most insurance companies).  Her MRIs every other month are around $27,000.  A shunt malfunction can happen anytime, and has fun anywhere from $50,000-200,000 or more, depending on what is needed.  We get a shipment of medial supplies for feeding her every month.  She is getting new custom foot braces on Tuesday - I'm sure those don't come cheap.  And, of all things, the kid is determined to eat her $5,000 hearing aids.

After my last post on this, some readers and friends suggested we look into Institutional Deeming (ID).  By getting a doctor to certify that Scarlett is in need of such care that she would otherwise be institutionalized or hospitalized, she can qualify for a whole new round of services that are long-term and independent of our income, including full-scope oncology, therapeutical and other medical services.  We had heard about ID from a family at camp, but their description made it sound like something far outside of Scarlett's level of need - fully wheelchair bound, non-communicative, etc.  Now, however, we better understand that ID is for several long-term diagnoses.  This sounded like the solution for us, and so we have been working for months to make it happen.

We learned that, in order to qualify for ID, Scarlett would need to first qualify for long term services through the Regional Center, a county service for children with special needs.  She is currently a Regional Center client in their early intervention program, but on her 3rd birthday, in just a few months, she will be cut off from those services.  Regional Center provides Scarlett with her fantastic preschool program at CEID.  To keep Regional Center services past age 3, we needed to Scarlett to qualify for one of the few categories of disability that Regional Center serves.

The categories are pretty clear:
1.  "Mental Retardation"
2.  Cerebral Palsy
3.  Epilepsy
4.  Autism
5.  Anything that looks or sounds like mental retardation but cannot actually be called such (a catch all for the myriad of developmental disabilities that may need services.)

Since she is not epileptic or autistic (despite having syptoms that echo both), and is not technically diagnosed with cerebral palsy (though we have gotten previous services based on her similar presentation), she had to fit the "retarded" categories.  And yes, the documentation, social workers and brochures are all still using "mentally retarded" to describe this population.  There is no special category for "has half a brain left after massive tumor, stroke, shunt malfunction and chemo toxicity.  Cute, social and very well cared for - just need insurance."

As usual, our team of doctors is on board to make it happen - they are Team Scarlett through and through. And so today, the key neuropsychologist evaluation came to us, describing how Scarlett fell into the .1 percentile - lower that 99.9 percent of children her age, in cognitive, language, motor and adaptive behavior development (I take it as a personal victory, however, that she scored at 2% in Social and Emotional functioning - her strength!) Then, she made sure to note, in bold letters, Scarlett officially "meets the criteria for intellectual disability."

I am not sure why this hit me so hard today.  This is what we wanted, what we asked for, what we desperately NEED to get her what she needs.  But it came down on me like a ton of bricks.  It seems like such a loss for her, yet another hit to someone who has already taken so many.  A small part of me wanted the neuropsychologist to come back to us, saying "There's just no way - she scores too high, is developing so fast.  You'll have to come up with something different."  I wanted, just once, for the better sounding, easier to hear, easier to accept diagnosis.  But, no.  She's mentally retarded, and forever will be.

A part of me has been waiting, all this time, since the first awful day she was diagnosed, for this to be "over".  After her first surgery, I thought it might be over, but then came chemo.  After the first year of chemo, I thought it was over, finally, and "all" we had to do was therapy, but eventually, she would come out somewhat "normal" and that all of this would be part of her past, not her forever.  Then the tumor came back, that bastard.  Now it feels like we will never, ever be free.  It lurks, no matter how far out, and I don't think I will ever feel safe again.  And now, there is a document, on my computer, my phone and in every file in every office we visit and attached to her social security number in the state and federal databases (if those even exist, I guess) that says she is permanently, irrevocably damaged. 

And I know that, at the heart of this, it is just a label that gets her name in a system.  It puts the right check mark next to her name that releases all the benefits that she deserves.  For that, I am truly grateful, because I honestly do not know how we would have covered her otherwise.  But it hurts, and I am tired of taking on the hurt.

As usual, I will try to focus on the positive:  she should easily qualify for Regional Center services.  That means we can get In Home Supportive Services (small payments to us as her full-time caregivers), respite care (trained professional relief for small periods of time) and, in the end, institutional deeming for Medi-cal.  This may take a few more months, but the wheels are in motion, and that is a relief.

But, as my own therapy today, here's what I see:


Unknown said...

She's such a beautiful piece of artwork from label will ever diminish that. Labels are so hard for us to hear. Our special needs children are so much stronger than we are, aren't they? They know no boundaries and know no labels. What a resilient, fighting, precious little miracle she is.

MC said...

She's so precious. So full of life. Love her smiles, her giggles. Hugs from PA

Emma said...

I understand what you are saying about labels. My Oct 2012 daughter has Down syndrome and we had to go thru the process of getting her qualified. And it just was so mind boggling to me that we spent so much time to get people to accept her for who she is and that she is just another kid, then we had to switch gears and prove all of her deficits.
I agree, intellectual disability or mentally retarded-neither is a label that you want used on your child.
I have followed your journey since the beginning (I was on the BBC Oct birthboard) and have always been amazed by your strength as parents. Keep doing what your doing, Scarlett is an amazing child!

Peg H said...

Long time reader -- since Scarlett was first diagnosed. Labels are labels, they are not who the person is or who they can become. All people are unique and special and all are deserving of love and care. If it requires a 'label' to get this child the care she needs and deserves, then so be it -- but it does NOT diminish her in anyone's eyes. She is a beautiful child of God and is created in HIS image. Keep loving her Momma, and keep fighting the system! Meanwhile, all of you will continue to be in my prayers, every day.

Em said...

She is precious. Thank you for sharing her with me. I always love seeing her grow and change.
Hugs, Em

Shan said...

I haven't walked in your shoes exactly, but I have felt the nonstop onslaught of waiting for normal, only to have it slip away again and again. My heart hurts for you. With you. In the end, as you point out, there is Scarlett in all her glory. And she is glorious.
Much love.

Unknown said...

Love the videos you posted. My 16 month old especially liked the couch hide and seek.... he laughed hysterically right along with her while we watched it. :)

Mishu said...

I had no idea that she was ever described as intellectually disabled. But it doesn't matter, it's just a paper work label. When I read your blog, I see how happy she is, how much strength she has and what wonderful parents you both are. And that's all that matters. You guys will have her and will see her happy, hear her giggles and laughs, and thats what makes all parents happy! Hopefully, she won't be in pain forever or have to keep on taking treatments.

Jo said...

Scarlett's laugh is infections!!! She is so beautiful!!

child of God said...

Oh hon, I know this is hard and your heart is breaking. This is only a worldly label and one that has no value except for you to receive the insurance and help that you need.

Scarlett is beautiful, precious and perfect. I had an aunt who was born with the umbilical cord wrapped around her neck and she didn't receive the much needed oxygen in time and was labeled 'mentally retarded'. Yes she never learned to read and write. Yes she needed a caregiver for her whole life, which was my grandma. But, she was the funniest, happiest, lovingest, kindest, person I ever knew. She knew instantly when you were sad and down and she knew exactly how to cheer you up. Everywhere she went she made people laugh and smile, she was so special.

Scarlett is very special and she is and will continue to be a joy in your life and one day this whole collection of hurdles that you are now jumping over will be something that you will look back at and see Father's hand right there directing and protecting all of you.

Lifting you all up in prayer asking Father to heal and protect Scarlett.


BabyWeightMyFatAss said...

Bittersweet I am sure. I have a daughter with Autism, and as much as you want that diagnosis for insurance purpose and school it sucks ass.

Best of luck to you and your family.

Infertile Myrtle said...

Oh boy, huge fat tears are falling down my cheeks as I read this post and watch the videos from half a country away. No, Scarlett is absolutely not mentally retarded--my own almost-2-year-old twins are doing so much of the same things: cracking up when we tease them, trying to mimic, screaming to see how loud their voices are. She is just such a beautiful and precious little girl. I hate that your family has to struggle and suffer to get Scarlett the care that she needs and deserves. My heart is with your family, and that's a great Daddy she has there (and, obviously, an absolutely incredible Mommy).

Trish said...

I think Scarlett is an amazing child! Just watching your video clips, it is obvious that she is special and looks like a ray of sunshine. You and your husband are doing a great job of being parents. Look at what a reward your beautiful daughter is!

E said...

Miss you Scarlett. See you soon. Chuck, Elaine, Carlos and Rachel

karen said...

I have been following your blog since Scarlett's diagnosis. I have loved watching her triumph and blossom in spite of the formidable challenges placed in her way. I love how you guys just parent her and love her as she is. Normal is a setting on the dryer. She is awesome.

Unknown said...

I remember when my mom was fighting for permanent disability she had a similar emotional response. It is so incredibly difficult to fight to prove something to get necessary support and services and yet not want to believe what you're saying at the same time. What I see from someone who only knows her from this blog, is a child who is exactly where she should be if you subtract out the time she's been truly "down" from treatment, surgeries, etc. It truly is JUST words on a paper, not a life sentence of truth.

Jenn said...

I have followed Scarlett like many others since the beginning, and as a teacher, I see so many students who probably have that kind of label. They are the most lovable kids alive, as is Scarlett. I see that by your pictures and videos. Yes, I'm still crying after reading your post, but I know Scarlett will thrive because of the help you're getting her, and because you two are such awesome parents. My 2.5 year old and I pray for Scarlett every night. So many on this blog are doing the same. We love her like our own. Keep fighting...all of you!

The Lang's from Iowa

Jacqui said...

Scarlett could light up a room with that smile, she is beautiful and precious every way possible. Your strength as a mother is inspirational, you guys are amazing parents!

Tamson said...

Oh, you make me tear up with those pictures of Scarlett. The world has been a better place with her in it, and with your sharing her with us. I know you have a lot of rough times, but, oh, that smile of hers just warms my heart. Love to you all from Pittsburgh

Tiffany said...

Brandi, your beautiful, heartfelt post made me cry. Scarlett is an adorable, happy, wonderfully cared for little girl and those are the only labels that matter. With this diagnosis, you both did what you had to to for your family to get the best possible resources for Scarlett. What an amazingly strong choice to make. You and Chris are heros!

Nyina wa Aaron said...

Brandi, I cried while reading this. You and Chris are the strongest people I have ever 'known'. Scarlet is such an amazing girl. I can't even imagine going through all this to get insurance for her, she should just qualify without going through this hell.

I will be praying for you. Love from NY