Saturday, March 20, 2010

I knew it was too good to be true ...



We have been so fortunate, over the last 3 years, in that we have seldom had to fight "the system".Be it hospitals,specialists,approval for certain diagnostic testing,therapists,equipment etc ... things have fallen into place so effortlessly.I have been so grateful for that ... can you imagine if we had to fight for those things,all the while fighting for Zoey's life?And trust me,many, many people do,under some incredibly stressful circumstances ... like, life and death circumstances.I have literally thanked God for each instance that something that was expected to require my "squeaky wheel gets the grease" method ...but lo and behold,it wasn't needed.Until now.And something tells me this might be the trend now that Zoey has aged out of Early Intervention.Remember those diapers that were going to magically appear on my door step after my case manager received my John Hancock at Zoey's last IEP meeting?Well,didn't happen AND if I had just accepted the letter or more specifically, accepted the reason for the denial,that still might be the case but at 5:30pm yesterday,boy did my squeaky wheel start squeaking.

"Coverage denied.Incontinence due to developmental delay." Say what? So my little fingers did their thing and I rang Mrs.So and So,expecting to find,on Friday at 5 o"clock,an answering machine.But I was pleasantly surprised to hear an actual live and in person voice.My pleasant surprise soon turned to not so pleasant when the bottom line was finally reached.I will spare you the go around but trust me it was a go around.A back tracking,side stepping conversation of contradictions.And I must say,I am not exactly proud of it but it does come in handy,I am a master arguer.I was polite.I was understanding.I was patient until she finally,with much prodding, spelled it out for me.Zoey was denied coverage for diapers because she has Down syndrome.Plain and simple.The reasoning.You'll love this.Because of her "mental retardation","cognitive delay",there is "no reasonable expectation" that she will ever grasp the concept of potty training and therefore diapers are only provided to those who either are expected to master toilet training OR because of physical limitations,such as Cerebral Palsy,when their body will fail to perform the task but their mind understands the concept.Are you following? Because I wasn't.My gosh ... I certainly know MORE children/adults with Down syndrome that ARE potty trained,rather than NOT.I asked her if she had in fact read in Zoey's chart that she had suffered a stroke and did indeed have a diagnosis of Cerebral Palsy due to that brain injury... seems she missed that part.She said she has 400 children in her case load and couldn't possibly read entire charts.Seriously?Entire charts?That diagnosis is like number 2 in the list but it seems number one,Down syndrome stops things in their tracks.After a lengthy conversation and my input of Zoey's 60 plus signs and her "potty sign",she is going to review the chart.I do feel sorry for the woman.My lovely home state of California is well,in the toilet itself.And after the fact,I thought about the countless other families, who genuinely need this service,receive the denial and don't have the energy or wherewithal to fight it?Like I said,just the beginning I fear, as Zoey gets older.Which brings me to my next rant ....

I love when Zoey and I are tooling around town,doing our errands,sitting at Starbuck's and people stop and engage me or actually Zoey, in conversation.I love telling Zoey's story.Sharing her journey of hope and perseverance.I love when people ask questions instead of staring,cuz people do that too...especially when I am g-tube feeding.I just absolutely love being out with Zoey period and absolutely love showing her off.Lately however, I have taken to saying something to people. Before Zoey blows kisses goodbye and we go on our way,I have no idea why I started this or what difference it will make but off my lips it comes,before I know it.I of course first thank them for the kind things they say,you know, like "how cute she is,what a blessing she is,how smart she is,how happy she is,what a gift they are",but I can't leave well enough alone lately and I follow with something along these lines ... "I hope 10,15,20 years from now when Zoey and I are out and she is throwing a fit and has plopped herself on the floor because she is trying to tell me something and I can't understand her,or she is blurting out inappropriately or hugging and tugging at a stranger's arm,I hope you will still stop and engage us or anyone else you might come in contact with that obviously has some type of developmental issues,cognitive or otherwise.I hope you will still think she is cute and that she is a gift and a blessing,even then."

I am under no illusion.Things are easy now.For all intents and purposes,Zoey is still a baby.She averages out at 7 months on her physical capabilities and anywhere between 9 and 18 months in other areas.She is just barely 4 pounds more then my granddaughter Charlotte, who is 8 months old.Zoey is a baby.I carry her.I rock her.I care for her every need,just like a baby.But God willing,she won't always be a baby.God willing,she will grow and thrive but chances are she will still need me to take care of a great deal of her needs,just as a baby or small child does.I hope some people will see her with the same eyes then,as they do today.

I suppose,it is obvious, that I still walk around with that proverbial chip propped precariously on my shoulder.Doesn't weigh me down like it use to but I still can't quite shake it.One day maybe.One day.

* Zoey signing "doll",while watching Baby Signing Time,a gift from her "boyfriend" Ray.

24 comments:

Christina Egner said...

I will say a prayer for you tonight. People just don't "get it" do they?

They probably have some excuse for just about anyone.

Cammie Heflin said...

Ugh! How frustrating! In Missouri diapers are covered by medicaid (if you know to ask!) but only after the child turns 4 since "typical" children are potty trained at 4 :)

Penny said...

I'm so sorry for a sometimes unkind world..... Zoey is so blessed to have a mommy that knows how to be squeaky wheel!

Your feeling of needing to protect her is so natural, we all become lions when people are blind and unkind to our children. May Zoey's light always shine, may people see Zoey and her originality and not some pretense.
hugs...........

Kristen's mom said...

Take it from someone that is already there. Kristen is still sweet, cute, oh and can throw a fit or two. Until leukemia returned a year and a half ago, Kristen was with me wherever I went. She held onto my arm and walked with me. Shopping, baseball games, school activities that my other children were involved in, her and I walked arm in arm. Now that she isn't able to go out I find people notice her absence, the lady that slices ham at the grocery store, the checker at the store, parents at the baseball games... they ask, "where is your daughter?" Yes, she gets the occasional stare, but for the most part, people out there are good. Now you need to listen to your own advice... "she'll show you the way, just as she has always done. Slow and steady, she'll continue to be your beacon of light." No worries...She'll mature and the kisses that she blows will turn into high 5's. Her glow that brings people in will stay with her forever. Her light will not go out it will only continue to burn brighter. you'll see.

Devon said...

Heather, I'm sorry. AGH!!!!

Just Another Ordinary Miracle said...

1. Did you know that Zoey can now say Ivey's name. 'Doll'is Ivey's name sign. So put two check marks next to that one.
2. You just summed up one of my huge fears of the future. I think Ivey and Zoey are pretty much the same size. All cute and magnitizing now - how will that be later? hmmm
3. We run around that same mulberry tree everyday. I have a story about my first encounter with 'the system' and the realities of it - but i could never post it... not a nice one. Stress that most people don't know you and your husband have to manage on top of the medical trivia.
I am going to look into cammie's comment. Ivey's diapers are not covered, but I don't know if that is an option here in GA - thanks cammie!

Mama Mason-Mann said...

Another very real post. Thanks for sharing the things I have been thinking. It was GREAT to also read the comment posted by Kristen's mom - to get a veteran's view. I feel so lucky to be a part of this world and to find the support in each of your words when you put yourself out there. I know you have had some problems with negative postings, etc., but please know what a difference your words make in other's lives (like mine). I look forward to the day when we can meet in person. Until then, I will continue to hang onto your words. :)

Anonymous said...

One would think that one would read, at the very least, the diagnosis before denying coverage. It just makes too much sense, I guess. Too logical.

Lacey said...

I like you, have been very lucky insurance wise. I've never had to fight anything life threatening. And though it does seem that diapers are a small thing, its the principle. Down syndrome diagnosis gets denied everytime. We did find that out soon after his birth. And if we want something covered we have to make sure to put one of his many other diagnosis down first. Its crazy, that people still don't understand the potential of Down syndrome children. I feel like we are spinning in circles instead of making progress. Ugh how frustrating!

tish said...

Zoey will be beautiful - inside and out - until the day I leave this world; I don't think I'm alone in that thought. I think that anyone who really knows Zoey can't help but see her pure beauty... no matter what her age.

At the 7:30 am Mass this morning, Bob and I saw an older girl with downs syndrome - a beautiful site - as we were going up to communion. She had a smile on her face that matched Zoey's smile; it lit up the room and warmed our hearts. I thought of Zoey right away, and ironically, I am now reading your post.

It takes a mom like you, Heather, to be your child's best advocate. I wish you the very best with those unethical insurance company policies...

Zoey is incredibly blessed to have you as her mom. You're a mom who is filled with unconditional love for all six of your babies... the caboose just happens to be the one who is carrying you along, putting everything into perspective.

Please give my Zoey a big hug and tell her that her Auntie Tish will think she is a beautiful blessing for infinity.

scrappy quilter said...

As a mom of an adult with DS, it does get harder (at least for us it did). When M threw a fit because he didn't want to leave Pizza Hut or didn't want to be shopping and laid on the floor, etc....people stared and then laughed!! It happens often. Yet we love him just the same (has you will Zoey) and we've learnt to ignore those who are so ignorant that they haven't moved out of the 18th century. And we became even more thankful of those who don't laugh and show kindness and concern to him and to us as a family. You'll learn to treasure those people and ignore the rest. Hugs

The VW's said...

What an adorable picture of Miss Zoey!

Great job, Heather, standing up and fighting for your daughter! We had been told that 3 was the magic number for getting diapers, but as soon as Gavin turned 3, our state decided to stop this program....Michigan is "in the toilet" as well! I was SO looking forward to this age, if only for this benefit!

I totally understand your thoughts on how people respond to Zoey now and hoping that this response continues as she grows and matures. I've thought about this as well. Right now, Gavin is still very little for his age and still acts like a baby, but I often wonder how people will react when I'm changing his diaper at age 10? In the big picture, I could really care less what other people will think about my sweet boy, but I do hope that they will continue to see him like I do.....a precious gift to the world! Just like sweet Zoey!

Love and Hugs!!!

Anonymous said...

Well for starters if anyone can "speak out" to the lady's response in your first paragraph - you dear Heather will, and I say to you - Good for you - and go mommy Heather go!

See you with my camera in a couple of weeks - get ready - Heather I know you don't care having your photo taken, but.....beware .....Bluebelle/w camera will be lurking about the house! Oh dear - I better be careful I might be sent to a motel....

Love & hugs to everyone

Bluebelle
PS Actually, I really don't care to have my phto taken either!

Kristy said...

Heather, Heather..you have to know this. I believe God handpicks truly special people for special needs children. People who are gentle, loving, patient and fighters for their childs well being. Your family is the definition of this and although trying sometimes, I know you of all people will be able to acheive what Zoey needs through the system. I have complete faith in you and know also that you will be paving the way to make things easier for other people on their journeys.

As for Miss Zoey..any time and every time I see your princess she will light up my face with smiles as I have told you before her story is an inspiration to me. 2days from now...20years from now. Even if she is having a grouchy day..hey don't we all??? She and your family are precious through and through. Truly that's all that matters. :)

Googsmom said...

{{{{{{{{{HUGS}}}}}}}

blogzilly said...

I don't even know what to say.

That is about the most stupendously insance reason I can possibly think of to deny that coverage. Unreal. Sucks.

As for when Zoey is older? I wonder that too aboutr Bennett. If he doesn't progress the way some people suggest he might, then he won't be as cute as people say he is now, and I hope that people will still want to spend as much time with him.

And that includes me. I am dealing with feelings lately I cannot process but that are coalescing into a blog that might shock some people...but there I times I feel more disconnected than ever, and I don't know how to improve it.

I worry so much about his father being one of the obstacles he faces in life, and I'm scared about it.

You're an incredible Mother. Truly outstanding. Zoey is one lucky girl.

Anna said...

Heather, once again you hit the nail on the head. My husband asked one night what it might look like in 10,15, 20 years from now.... she wont be a "cute toddler" anymore. I told him it didnt matter. She would still be ours. We can do this.

Angi said...

Some people will never "get it"...plain and simple, though no one should stop trying to "help" them get it:-) I "see" these smiling souls no matter what age or size, tantrums or high fives, I acknowledge every person as a person...I know that makes sense as you know a bit of my family "history"...I can tell you cute stories and all out hide in the closet stories, from grade school to highschool and into adult life...but what I found and continue to find is most people are good...even if they don't always "get it"...

Anonymous said...

We got diapers for both Bethany (cp) and Faith (ds). Bethany is now trained but we still get a credit for diapers (I buy them and then send the receipt to them and they send me a check). I plan on potty training her soon but it wasn't a stipulation on getting them.
Like I have said with other things it is mostly due I am sure to budget.
Good luck, I hate being the squeaky wheel but sometimes you just have to do it.
Katie

deena said...

Nobody thinks we are cute when Miss Camille throws a big fit - but she does look good - it is important to be well dressed when you have plopped yourself down and you are screaming no - no mommy. In fact I may give it a try sometime, it could be great therapy.

ABandCsMom said...

Wow! Unbelievable. Clearly those guidelines needed to be rewritten. Carly was fully potty trained at 2! I realize that is not the case for all of the kids born with DS, but it is very much possible to potty train our kids. Michigan doesn't cover diapers. Or much else for that matter. So I never had to deal with remarks like that.

TheRextras said...

Very well said.

Call Ms.SoandSo back.

We all want to know the outcome.

Barbara

ANewKindOfPerfect said...

I was talking with Lacey yesterday about this very issue. Insurance in California, and more specifically the diapers! We get diapers for my Peanut, we have since she was 3. I was told that if she "wasn't expected to toilet train on a normal schedule, or in the near future" that she qualifies. Are you going through MediCal, or CCS? Ours come from CCS - along with chux. A lot of chux. Literally 150 a month, and we use 2 a day. If you ever need chux, say the word. ;)

I hope you get your diapers. I hate that they look at the diagnosis before making a decision like this. I told Lacey, we get diapers and chux but no wipes. You can only get wipes if you are a paralyzed quadrupalegic. Whaaaat? But she can get diapers and chux. Makes so much sense huh ...

Of course, we just got denied our car seat because it's not "medically necessary". Off to fight that battle now!

Anonymous said...

I had to fight once for William's speech. He is autistic. The county said they didn't have someone to come out. I made one call& offered to call my father. Not much of a threat but both my state representative & congressman just happened tobe hunting with dad. Guess what I had services scheduled that day. Makes you wonder sometimes. Evy