Friday, February 17, 2012

Signature Struggles

Bookmark and Share
Each day continues to have it's own individual signature struggle. Today I had to take Luke to the doctor, and had to take Noah with us. There is no one to call for help - no extra set of hands or even someone to stay with him. Chris and my mom work through the day, so I'm on my own. I had hoped Noah would be calm and collected, I coached him; asked him as if I was reasoning with a child that could easily communicate and agree to my terms, but to no avail. The moment we walked through the doctor's office doors, the hysterical screaming started. He has a tremendously negative memory association with anything relating to any doctor's office. I know he was disrupting all around him, some people realized Noah was handicapped as he arched and flung his arms about smacking me in the face, others probably thought he was simply a misbehaving tantruming child as they looked at me with distain for why I couldn't get my child under control. Finally a nurse asked if she could help me, I am always hesitant, as I know that Noah often has difficulties with strangers, I told her the only way he'd calm is if she walked him around the building outside. She was so willing to help and off they went outside to stroll around while I dealt with Luke. I felt bad as although that nurse has a heart of gold for Noah, I know that she didn't sign up for appeasing a special needs child on a walk today. Some days you have to admit you can't do it all, and today was one of those days for me. As hard as I try to juggle both Noah's needs and Luke's needs, there are days when I simply need help.

Noah's equipment and therapy needs continue to increase with little to no help from Medicaid. Chris and I struggle tremendously with asking for help, but are considering opening something called a "gofundme" account on Noah's behalf to aid us in getting him all that we can't. Noah needs specialized shoes, the quote is $193.50, plus $30 shipping and handling, he would likely need another pair in the fall, equally as expensive. Chris and I have realized for sometime that we lack adequate seating and creature comforts for Noah, he spends his entire day laying on the floor, there is no other place for me to put him. He has no stander, no corner-sitter, no chair, nothing. He has nothing. I searched for options for Noah that would both make him comfortable and make him be able to participate with us, and stumbled on something called a Chill-Out-Chair. I made an inquiry to the maker, and with tremendous kindness, a trial chair was offered to Noah to try in-home. It still needs to be transported to a location I can closely pick it up at, but it should hopefully be available for him to try this coming Monday. I have a feeling we will fall in love with it, but the base price for the chair is $1,500, and that doesn't include tray features, custom foam features or a roll bar. Most of Noah's therapies are also out of pocket costs, and we are having trouble keeping up, yet we recognize that Noah genuinely needs all of these therapies to help him with his continued recovery of his gross and fine motor skills.

Over the past three years I've faced on again and off again criticism for being honest with our personal struggles on Noah's special need journey. Many really want you to depict nothing else other painting everything rosy. While even others in the special needs community feel that you are doing a dis-service to special needs children everywhere if you come off as less that the strongest, happiest, thrilled with the land of special needs person on the block. I however feel that is simply attempting to hide behind the pain. I don't want to be fake, I don't want to sugar coat how I'm feeling, what life is like for Noah. Sure we have days that fill us with moments of joy, how can you not when God grants you the gift of your child waking up and smiling at you each morning, but without a doubt heartache and struggles exist daily.

I wrote my first guest blog for Handicap This that was published today. Handicap This was formed by two men, Mike Berkson, born with cerebral palsy and Tim Wambach, Mike's long-time companion, on a mission to further awareness about judgment, and breaking down the barriers with those with handicaps and reminding everyone of each other's potential regardless of physical challenges one may face. You can find my guest blog at the following link:

"Once all struggle is grasped, miracles are possible." Mao Tse-Tung


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Friday, February 10, 2012

The Painful Walk

Bookmark and Share

This week I've spent approximately three hours each day on the phone dealing with SSI, Medicaid, Therapists and Equipment vendors, really without much resolution to anything. SSI has decided that Noah is no longer eligible for SSI based upon figures they claim to have received from the Department of Labor, even though Chris' paycheck stubs reflect something entirely different. In addition, they still have not done anything with the numerous appeals and requests for informal review that I have submitted in regards to multiple overpayment determinations that we disagree with, that have been outstanding for as long as six months. They claim our case has a new caseworker assigned to it, hence the delay in action and review, however this is the same caseworker that we've had since at least August of 2010. They also denied receipt of many paycheck stubs despite the fact that I have fax confirmations and certified mail receipts to indicate otherwise. And they tell me I will never receive written confirmation of any debts or monies still outstanding on any overpayment dispute once they decide to get around to working on my requests for review. Since this determination, Noah's Medicaid will also be cancelled effective 2-29-12 unless I can get them to fix their error, although they warn me there will likely be a lapse in coverage until they determine and review his eligibility. I know that Noah is still entitled to SSI benefits and that an error has occurred, I just am simply having a difficult time getting anyone to correct the mistake.

Medicaid also did not approve Noah's PAR requests, so he was unable to attend physical or occupational therapy this week and we said goodbye to the Stingray pediatric stroller/wheelchair that was on loan from an equipment vendor. I also called to figure out what I could do about our denial on the toilet seat, Medicaid claims that the equipment vendor failed to properly document Noah's need which resulted them making a determination that Noah did not need a toilet seat and I was simply "a lazy parent on Medicaid services who didn't want to potty train a normal child." They told me they need a letter from a doctor "written at a 3rd grade level" outlining Noah's exact disability and all that is wrong with him for them to consider equipment. When I called back to tell them back today to see if I had to appeal or submit a new request, I was now told that the equipment vendor and Noah's doctor would likely need to do a conference call with Medicaid, and that I may or may not have to appeal, but they couldn't give me advice on how to proceed or which way would be better to either resubmit a request or appeal.

It's truly unbelievable that we have to go through so much to get Noah help and services. It isn't just hard enough to have a special needs child that cannot walk or talk that I have to care for on a 24 hour basis 7 days a week, but I have the added stress of trying to deal with all these other agencies that are doing all they can to creatively get out of assisting him. We've lost our privacy, as I have to explain to each therapist how Noah is doing, how he got a pea size bruise on his head, why his skin is dry, why his face is red, asked how much does he weigh now, how tall is he... when did he last poop, how's his eating... you constantly feel like you're under a microscope even though I am caring for Noah with every fiber of my being and doing all that I can to be the most incredible super-parent I can be to him. There is nothing NORMAL about our lives - nothing. It's been stolen, all of it.

No one calls to ask how we're doing, friends... family... well - where are they? Only two neighbors came to my door with cards to uplift me for my birthday, help me when we got buried with nineteen inches of snow. Everyone has moved on, our lives are too complicated, who on earth would even want to deal with half of what we deal with? Some days I dream of how we can find our way back to how life once was - the way things were supposed to be before our lives were forever flipped upside down. I would never want anyone to walk in my shoes, what a painful walk it is.


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Saturday, February 4, 2012

Waiting for Miracles to Blossom

Bookmark and Share
Noah & Daddy out in the Snow

We received notification that Noah's request for a toilet chair has been denied by Medicaid:

"f/u 2/7 e-mailed, D339497 denied flamingo, per Melissa, ref #2360219, client is not toilet trained at this time so equipment is not a benefit. She said he needs to be toilet trained to request equip. LMN from Kerry states he is beginning to use body language and sounds to tell parents when he needs to use the bathroom and is responding to verbal cues when asked if he needs to use the bathroom."

It's not like I can dangle him over the toilet while his floppy body goes side to side to potty train him. Regular children get training potties... yet it's a BIG deal if you want one for a special needs child - they aren't quite "entitled" to the same commodities or luxuries the rest of us are. So no toilet, and no chair. It is such a big misconception that insurance helps. Really it's quite a joke if you're on this side of the fence. It truly is terrible to need something for your child's daily living that you can't get your hands on. These items are literally thousands of dollars. There isn't a chance of paying for them out of pocket. Combine that with Noah's out of this world therapy costs and it's enough to make you want to throw a tantrum bigger than Rumpelstiltskin. One not so friendly SSI representative told me a few weeks ago that if I didn't "like" the system and how it benefited my son that I should go sit on my state representative's door step... oh yes isn't that the answer to everything.... it all falls upon deaf ears. Not to mention what time do I have to try to negotiate unfair terms with the government?

Noah has been in great spirits for the last few weeks. Lots of smiles and giggles - especially for his daddy. Although Noah still seems to be struggling with eating soft solids like spaghetti still, he has taken renewed interest in eating his little brother's yogurt bites, and Quadratini chocolate wafer cookies. He finds the crunch it makes funny, and I'm thrilled he will at least bite down on something, other than my finger and his toothbrush. I still continue to pray that with a lot of time, patience and love, that Noah will one day eat solid foods.

Our big snow storm brought us 19 inches yesterday, I watch the neighbor kids play, sled and build snowmans. I try to pretend it doesn't pinch my heart but it does - some part of me I suppose will always ache for Noah to participate in age appropriate activities. His daddy did take him outside briefly to see the snow, but the snow is simply too bright and he just squinted and was the best sport he could be for 5 minutes while his younger brother touched the snow for the very first time. It's like night a day sometimes, having two children that experience the world in very different ways. Noah missed out on so many activities from sucking on his thumb to putting odd objects in his mouth, to even grabbing a handful of snow and finding awe as it melted and disappeared. And I genuinely think that Noah understands his surroundings and recognizes his little brother who is not even half his age can do things he only dreams of. As a mother I can only hope that it will fuel his drive to work hard to gain back the physical abilities that he lost at birth. So for now we continue to wait on miracles to blossom, just like we await springtime.

"Where hope grows, miracles blossom." ~ Elna Rae


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.