Truer words were never spoken. I’ve seen this on several web sites for kids with special needs and it’s perfect!
“God doesn’t give children with disabilities to strong people;
He gives them to ordinary, everyday people,
then He helps the parents to grow stronger through the journey.
Raising a child with special needs doesn’t TAKE a special family;
it MAKES a special family.”
I thank God every day that I am the mom of Josephine Betty Joy. The mom of one amazing little gal!
Our fun on July 5th! Enjoy!!!!
http://www.facebook.com/video/video.php?v=1512460576448&ref=mf
(CLICK TO WATCH VIDEO)
We seem to have discovered another “possible” symptom or characteristic for Josephine and “her” disorder (I use quotes because each kid with Tet 8p is their own patient, until we can get a sense of what is what for all the kids).
The OT and PT are thinking Josephine has a sensory defensiveness issue (http://en.wikipedia.org/wiki/Sensory_defensiveness), as well as a hyposensitivity to movement. These are both considered to be Sensory Processing Disorders.
Is this a result of Tetrasomy 8p? Could be or it could be it’s just Josephine. What we do know is while some typical kids have can have these issues, kids with special needs tend to have this more often.
Why is this presenting now? My thought is Josephine is getting older and becoming more familiar with touch, sound, taste and smell. She is “waking up” to the world a bit more.
Josephine has been having “gag reflex” moments in the past, but I always thought it was due to saliva or eating something that got caught in the throat. Now I look back and realize she may have been having sensory issues for some time now.
How did we figure this out?
We were at Stepping Stones for group therapy and the OT, Alexis, suggested putting Josephine in a tub with uncooked pasta (penne, rotini, elbows…yum!). I did so without any explanation to her and she freaked. We took Josephine out and while the Alexis was holding her, Josephine started to gag. Immediately, Alexis identified that the pasta was the reason for the gag reflex. Not a clue until now!
So, to make sure I felt comfortable with this new information, I mentioned it to Kim, our Early Intervention OT. Kim agreed. In past therapy sessions, Josephine has been unhappy with messy play such as with pudding and finger paints. She can’t stand holding a crayon and won’t touch a marker.
In fact, after discovering this potential issue, I observed more of the same reaction during lunch one day last week. I gave Josephine pieces of mixed fruit, which is a little slimy from the juice. She didn’t want it, so I added some Cheerios as an “incentive”. Instead of eating both, Josephine looked at the tray and started to gag again. Then she tried to separate the two foods and got very frustrated at the sight of the food. I took the food away and she was fine.
I mentioned these occurrences to Lana, our Early Intervention PT, and she was surprised to hear this. She wanted to test it herself. So, she put some bath foam on a table and showed it to Josephine. No reaction. She put one finger in the foam. Little reaction. Two fingers. More of a reaction. The whole hand = GAG REFLEX. Lana was convinced.
What happens now? Will Josephine have this for the rest of her life? Who knows.
Kim gave us a brush and explained that we now need to do a brushing protocol. Brush Josephine’s hands, feet, legs, arms and back every 2 hours and follow it up with joint compressions. This will help desensitize her body a bit. Follow this link for more information on brushing: http://www.developmentaldelay.net/page.cfm/135.
Maybe she will always be sensitive to these things. But we now know if there is a random meltdown, we can better understand the source and how to correct it to make Josephine more comfortable immediately and in the future.
OK…I have to get this off my chest…many of my friends/family/therapists are saying, “Be happy. You’ve been approved. Josephine is getting her specialized stroller.”
But I can’t. The next question is, “Why?”.
Semantics!
I can’t get over the fact that Oxford has NO idea who Josephine is, or care for that matter.
They denied her authorization for the Kimba stroller the first time, claiming a typical stroller suits her just fine. Yet, they have no knowledge on which to base this decision. We submitted genetic test results and a wonderful letter written by our PT and to that they say, “Coverage for specialized strollers for infants and toddlers under the age of 3, whose transportation needs can be adequately served by regular strollers, are not a covered benefit under your health plan”.
So we appeal with another letter, this time written by Sheldon and I (mostly Sheldon). Low and behold…APPROVAL! We have had our faith restored in the insurance company. Funny thing though. I noticed the approval is based on a pediatric “wheelchair” description. That’s odd, I think to myself. But dismiss it because WE GOT THE STROLLER! That should be the end of things…but it’s not.
3 days later, I get another letter from Oxford, stating, “We have considered the information submitted in support of your appeal. The denial remains upheld as not a covered benefit under the health plan. The Medical Director/Consultant who participated in this appeal review is a physician who specializes in Internal Medicine”.
Confused? So was I. Until I called Allcare Medical. My heroes! When the first denial came through, Allcare Medical resubmitted our request as a “pediatric wheelchair” instead of “stroller”. Thank God for Allcare! They know how to work the system and get what they want and what the patient needs.
But what gets me is who the heck is this Internist that denied the appeal? Why an Internist? Shouldn’t the decision be made by a Developmental Pediatrician or at least a Pediatrician, at the least? RIDICULOUS!
And what about the semantics of “stroller” vs. “wheelchair”? ARE YOU KIDDING ME? All we had to ask for was a wheelchair and we wouldn’t have wasted so much time trying to get approval for a stroller…REALLY??!!!
So much for trying to do things the right way. I continue to be amazed by all the work that is expected of us as parents of a child with special needs in order to get what we can for Josephine. As if we don’t have enough on our plates: you want us to write letters, jump through hoops, run around from place to place and still not get what we need and a deserve?
So…my new attitude…get what you need for your little princess and screw what is right and good! That’s the way the insurance company and government want to play…YOU GOT IT! The battle starts NOW!
GOOD NEWS!!!! After our 1st and only appeal letter to Oxford Insurance, they have APPROVED Josephine’s special needs stroller!!!!!!!!! I cannot tell you what I relief it is to have this approval! I was prepared to contact our congressperson and get the ball rolling any way I could.
It seems to be the norm to deny initial requests because insurance is a business, so if they can save money, why not? But I will assume they finally saw the necessity for Josephine to have the stroller. Or maybe they just wanted to “test” us to make sure she really NEEDED the stroller. Whatever reason, I will say THANKS!
Guess the wait time for the stroller is a couple of weeks…I am so looking forward to getting Josephine out and about again in a system that will actually work FOR her instead of against her.
Anyone need a nice and typical umbrella stroller????
OK…So this is my time to get out some aggravation. I will try to be reasonable and censored, but knowing me, that will fade quickly.
Two experiences this week have made me wonder who watches out for our children with special needs. It’s completely up to the parents/caregivers to fight the bureaucracy that creeps around in our society:
DIVISION of DEVELOPMENTAL DISABILITIES
Sounds like a nice name wrapped in a pretty bow that will help all those affected with a developmental disorder? Wrong. I have to preface this rant by saying we have just completed the application for Josephine to register for the DDD and this may all be for nothing, but it’s what I am feeling at the moment and need to get it out.
A rep from ARC of Essex County helped me complete Josephine’s application and I am super grateful for that. She is a great woman and is very knowledgeable with how to cut through the red tape. Before we even got started, I showed all the cases about Tetrasomy 8p and was certain this would solidify the acceptance. Quite the contrary! According to the ARC rep, the lower the IQ, the greater the chance of acceptance. Most of the cases show an IQ range of 60-78, too high to help Josephine’s case, even though her IQ has not been tested. The ARC rep had to remove 3/4 of the articles and only focus on the most severe. The DDD doesn’t like to see children with an IQ over 70. And since Josephine is only 1 of 20, it could be likely she would be denied because she is not delayed enough. And there is no proof that the disorder is a life long situation. WHAT????? Her chromosomes are not going to change! Her therapy will help her catch up, but she will always need some assistance with daily activities. ARE THEY KIDDING ME?
Having said this, if she is accepted, Josephine will have a great deal of benefits coming her way, including respite care and after school programs, as well as summer camp opportunities, all free of charge.
So, all we have to do now is wait 3 months – 1.5 years to find out the answer. Stay tuned!
OXFORD HEALTH INSURANCE
After much discussion with Sheldon and our PT, Lana, it was decided Josephine needs a assisted mobility device in lieu of a mainstream stroller, given her hypotonia and poor muscle strength.
We met with the rep from AllCare Medical and he measured Josephine to fit her for an adaptive stroller that will grow with her and give her the support she needs whenever we are in a public place. It can also be used as her high chair in restaurants, as the mainstream high chairs are not safe for her and do not give the support she needs. Lana wrote a wonderful letter of medical necessity, explaining Josephine’s needs, and it was signed by our pediatrician as well. We also included her genetic test results and any other information supporting the need. It seemed like a sure thing.
Yes, it was a sure thing. A sure thing we would be denied! Why, you ask? Because according to the all-knowing “powers” at Oxford, Josephine is just fine using the typical stroller and high chair and does not need the added support. REALLY!!!!???!!! I’m sorry…have these “powers” met our daughter? Have these “powers” seen her in a typical stroller, to see how uncomfortable she is and how unsupported she is? Have these “powers” seen Josephine hit her head numerous times on the back of the typical high chair because she throws her head back without warning? REALLY?
Well, I assure you that Oxford has made the wrong Mommy angry. We are already in the midst of an appeal and will inundate Oxford with more information than they can handle. This is completely unacceptable, to say the least. Denying a child the right to enjoy an outing with her family, all to save a buck…Thanks Oxford. Glad to see my monthly premium is being used in the best way possible!
Ready for Round 2!
Okay, it’s getting close to midnight…there’s finally silence. Nope, spoke to soon…as soon as I wrote that sentence, I jinxed myself. The crying continues. I wish I understood what she needs. As Krysta wrote in her earlier post, is it the normal toddler-fighting-sleep-scream or something else. Is she on some type of sensory overload?
Not really adding anything new…just my two cents. Just wish I could understand her more to help her.
The saga continues…
As of January 5, 2010 (HAPPY NEW YEAR), Josephine gained 3 ounces since December 4 – she ZOOMED up to 15 lbs, 11 oz. and is 29 3/4 inches long.
Hey, a gain is a gain is a gain! As long as there is a gain, we are thrilled!
Today is Josephine’s Birthday!!!! Annnnd, she has 2 teeth coming in!
She’s now awake…oh, the life of a baby:) Sleep, Eat, Diapers, Sleep, Eat, Diapers…etc.