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.