Benefits Withdrawn

Just as I think things have been resolved and sorted out receive a call today from one of Noah's therapy centers informing me Noah has made the list for children that are no longer eligible for Medicaid and therefore he can't attend therapy. I keep thinking surely it's an oversight, but sure enough after I make numerous calls to SSI, Medicaid, the Jefferson County Department of Human Services they all confirm that Noah's benefits have been withdrawn without "further information." Noah has been without insurance since March 1st. That means no therapy and the most frightening part, no help with medical costs should he need to see a doctor. I keep wanting someone to pinch me so I can just wake up from this bad dream. All of it - from the very beginning when a doctor uttered the words "severe global brain damage." How has this become our lives? I really am not sure how to sort it out this time, SSI says I have to deal with Medicaid, Medicaid tells me I have to deal with the Department of Human Services... and I continue to be bounced around. We seem to be stuck in some serious muddy waters.


I walked by a picture of Noah taken when we took him off life support with the Lay Me Down to Sleep Foundation that hangs on our bedroom wall, usually the picture brings me such comfort - my miracle picture. Yet today, it brought pain, not for me but sadness for my Noah. I just wish I could do so much more for him. Get him therapy he needs and deserves for a chance to get better, equipment so that he can sit upright and not have straps digging and cutting into his shoulders because he is too big, stable positioning so he has a chance to learn to eat better, a bed that offers him safety and elevation so he can breathe and sleep better. A chill-out-chair to sit with the rest of the family on the couch to feel apart of the family, a toilet so he can go potty like any other toddler. There is no worse feeling in the world than feeling like you are falling short when it comes to providing for your children. Noah deserves so much more, and the system is failing him - it's failing us.

I am so frustrated that I can't seem to fix Noah's SSI and Medicaid problems, that I don't have the funding I need to get him all necessary therapies that Medicaid won't fund, all the equipment he needs that is denied. It is such an uphill battle each and everyday, and it does wear on me, I think I've aged years, cried a thousand tears, and fought many wars and I still feel like we're not much further ahead than where we started.

New news articles are being passed around the special needs community of doctors who feel that euthanasia or "after birth abortions" should happen for children like Noah so they don't cost the community money, time and efforts. People discussing how they just used to put thumbs down children's throats to suffocate them in the old days to prevent children like Noah from existing. And really it does feel like most times that many view Noah as a burden on society. We haven't come as far as people might think. Even an article with a mother stating: "If I were the mother of a suffering child - I mean a deeply suffering child - I would be the first to want to put a pillow over its face... If it was a child I really loved, who was in agony, I think any good mother would." Well then put me in the group of bad moms because I love Noah so much that I would die for him before letting another human being harm him, I would cut off my right arm if I could find him all the therapy in the world, I would give away my all my earthly possessions and live in a box if he was given every opportunity he deserves in this world. Once you become a mother you fight for that precious life that God blessed you with at all costs. I only wish that these evil thoughts about children like Noah didn't exist. I fear greatly that there seems to be so many that casually think you should erase a disabled child's life and just "end them" like they never happened. that they are this financial burden sucking society and taxes dry. I know I could sit her on my soapbox all day long and my small voice can't change a thing, but until my dying breath I will be here for Noah giving him everything I've got, even if that means continually hitting my head against brick walls when it comes to getting him the help he is entitled to.


For those interested in reading about these horrific thoughts about terminating precious lives like Noah these are some articles: We all should be very afraid of the direction this world is headed. We welcome all the prayers we can get as we continue to fight on to help Noah.

http://www.dailymail.co.uk/news/article-1317400/Virginia-Ironside-sparks-BBC-outrage-Id-suffociate-child-end-suffering.html

http://hme.bmj.com/content/early/2012/03/01/medethics-2011-100411.full


Love,




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

Benefits Are Back

Some people measure the closeness of Spring by a groundhog seeing its shadow, some predict Spring's arrival with a flock of robins in their yards, we however predict Spring in our house by a change in Noah's sleeping pattern. And according to Noah Spring is very close. Noah has had some really great therapy sessions this past week, he's working hard and doing things I never thought I'd see him do. Even his vocalizations are starting to change and every so often I can swear I hear a familiar word.

I finally won the war with SSI and Medicaid after nearly thirty days of calling daily, correspondence and ultimately at the end getting more firm and loud than usually suits my typical demeanor. I never did get one return call back after my many messages - not even from a supervisor. Not one courtesy call back at all in thirty days of leaving messages. They should change their voice message to say "we will never return your call" from "we will return your call within two business days." As a former government employee I find this type of customer service completely unacceptable. The very least you can do is return someone's phone call. I finally got a hold of a gentleman on the phone and refused to let him hang up, or transfer me to someone else and demanded since no one else would help me that he was going to. He reluctantly did, confirmed that the last letter ever sent to us was a SSI denial, and that no paperwork had been sent reinstating Noah's benefits, I told him that was unacceptable, and that I needed something in writing that day that expressed Noah's reinstatement of benefits. I think I scared him a bit and played every power card I could think of straight down to I onced worked for a Judge and quit pulling my leg with crap and produce results. Sometimes you just have to get firm, as being overly nice gets you put off. To say the least by the end of the day I had a fax in hand confirming Noah's reinstatement of SSI and Medicaid.

I am sure that the SSI and Medicaid problems will likely appear in the future again, I am still not confident that Noah's amount is accurate and believe they have likely set us up for additional overpayment problems. Yet they now tell me they no longer want me reporting Chris' income monthly like they asked me to do previously. It's like dealing with a Bi-Polar agency. So it sounds like we'll be dealing with a new audit a year from now. And really the idea of a year of not having to deal with this hassle and worry about Noah's benefits seems rather a relieving idea.

After a few days of working out travel and courier arrangements with a vendor, Noah was finally able to trial the chill-out-chair. It is so nice to get him off the ground in a chair that is safe for him to lounge in - especially now that Luke is trying to literally walk all over him. Noah seems to enjoy his time in the chair, and I am genuinely glad we had the opportunity to try it. I hope one day we might be able to find a way to get him one. It really is a nice piece of furniture for a child like Noah that would last many years. I expressed a big interest to the vendor and he sent me a quote of $2,528 including shipping and handling. That's enough to make one fall over. Really you would think somehow I could get used to seeing big sticker prices for anything Noah needs, but my jaw continues to drop every time.

Noah seems to be working very hard on his arms and hand coordination. His new favorite activity is to take out the DVD's on the lower half of the rack. He empties the entire lower level, and I put them all back and we do this all day long. Often times he gets quite mad at me when I put them back, as I think he feels he spent all that effort getting them all out only for me to put them back on him. I am rather pleased though that he seems to be enjoying himself and that he puts so much focus on the task. Noah works so had and is so proud of the things he can find a way to do. Hopefully that inner drive he has will fuel him to do so many more amazing things in life.


Love,



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

Signature Struggles

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:

http://handicapthis.com/2012/02/17/be-the-change/

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


Love,



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

The Painful Walk

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.


Love,




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

Waiting for Miracles to Blossom

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

Love,




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

Three Noahs

I made an appointment for Noah's haircut this time, making it more difficult to be turned away. Three children all with the name of Noah who also all happened to be three years old, all walked in for appointments at the same time. We all joked with odds like that we should all play the lottery. Ironically, the same hairstylist that turned us away a few nights previous was the one who had to take Noah for his appointment. She was overly nice, asking what seemed a thousand times if we were satisfied with Noah's haircut, hopeful and optimistic about all the things he'd be able to do in the future. I think it was her way of apologizing without really saying the words. I let it be. As really I suppose that is what God's Grace is really all about - Noah has his own ways of wedging himself into people's hearts and changing them for the better. He obviously didn't need my intervention to open her eyes and her heart.

Chris and I took a brave step last night, we all went out to dinner as a family, something we haven't done well before Luke was born. We have a pediatric wheelchair on loan, we don't get to keep it, and we will only have it a few weeks. That is a huge regret I have is letting therapists pick Noah's pediatric wheelchair at only 10 months of age. The dreaded Kidcart. I hate that thing. I seriously hate that thing. Every time I look at it, I'm reminded about what a mistake it truly was. At the time being so very new to the world of special needs, I had no idea there were a multitude of other options out there. The Kidcart was presented to me the only fabulous option for Noah, so it was ordered and received February of 2010. Noah never ever would sit in that chair, he hooked his arms on the rests causing himself injury, his equipment vendor attempted to take the arm rests off, of course disabling the tray feature simultaneously, adjusting the hard foam in the back and seat to make it more comfortable, but that seat was never a match for Noah. Now of course since Noah has at one time been given a pediatric stroller/wheelchair, Medicaid doesn't want to give us another one - even nearly two years later. So we operate only from traditional strollers for Noah. He has no chair to sit up and truly see the world.

I told Chris we need to take advantage of the loaned equipment and go to dinner. Brave move on my part. As I wasn't sure how we'd be perceived in public with an obviously handicapped child in a wheelchair and a small baby. People pass judgment rather quickly. I called Texas Roadhouse, Chris' favorite place to eat, and explained we'd be coming with a wheelchair and needed a sling for a baby carrier, they were amazingly nice and said they'd hold a table for us that would accommodate us. I thought maybe we'd be forced to wait, but we were able to get right in, a table already set up for wheelchair access and a sling to hold the baby carrier. What a relief that it was that easy. We sat down and Chris set Noah up to eat, as he expects to eat right upon arrival. I sat and watched other people watch us. Some looked on with tremendous admiration, offering me slight smiles. I seen pity and sadness in the eyes of others. And even expressions of relief. Relief that it was me - and not them. An expression I'm familiar with, as I gave that same expression to a mother and child in a doctor's waiting room about a month prior to Noah's birth. I was so thankful and relieved that it would "never" be me, as I would give birth to a healthy baby boy. But that is just it - you think things like this can't happen to you, but they can.

Chris and I ordered items from the menu that aren't typical of us, maybe staying with the theme "different is okay," the outing went off without a hitch. And it made me long even more for having a chair that I could pull right up to a table and have Noah participate with us. It was refreshing to feel like we were somehow rejoining the world. Trying to become a part of it again. I think it was healthy for all of us. As we left the restaurant it had grown so crowded that it was back to back people. No one could move. Yet it was like the sea parting as Noah made his way to the door, leading us in his chair, lighting up the way with his ocean blue eyes and tender smile. He was happy.

"Beginnings are usually scary and endings are usually sad, but it's everything in between that makes it all worth living." Sandra Bullock in "Hope Floats."


Love,





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

I Chase Small Miracles

Christmas break from therapy spoiled us a little. I admit it really is nice to take a break sometimes from therapy. The scheduling, the phone calls, the people in and out of the house, getting both boys fed, ready and out the door in time to make it place to place. Sometimes I don't know who is more tired, Noah or me. Yet we trudge on because we know that we must - that Noah needs this extensive team of help.

There are days, like today, where I wake up with a crushed heart that is in a million teeny tiny pieces. So tiny it's impossible to collect them all and glue yourself back in time to present yourself to the world as a mom who isn't hurting over a child that is limited in physical ability. I spend my drive to therapy with on and off again tears, thinking, hoping, thinking some more and ultimately praying as hard as one can. Just let him sit... just him talk. And just when all feels lost, a small miracle happens that again somehow sparks that ultimate "hope."

Noah was asked to kick his legs in the water today by his therapist. I glanced over realized that he was kicking and immediately asked the therapist: "Are you doing that?" She looks at me with a huge smile and excitement and says no he's doing it all on his own. 17 times continuous kicking his legs in the water by himself upon request. Then another 20 intermittent times upon request. I was in awe. He understood we asked him to kick! And he was physically able to deliver upon that request. Then we worked on grab and releasing of objects in the water. Noah has never been particularly good at grasping objects. Today he refused to let them go and give them to me! I am not sure I even have words to describe what watching something your child has never been able to do for the first time is like.

I wish Chris had been there, its kind of the equivalent to watching your child say a first word or a first step. This was a first for Noah and I wish his daddy could have witnessed this amazing moment with me. A sense of hope had again re-sparked as I tried to piece all those shattered bitty bits of my heart back together to make it through the rest of my day.

Things were going rather well I suppose until we attempted to get Noah's haircut this evening. We generally walk-in with no problem, however tonight Noah was refused. The hairstylist was just finishing up with a child and as I was putting my name on the list told me that she had an appointment right after this one (which you could clearly tell was not the case as she smiled and giggled to a friend next to her), in any event she said the store's policy was to take no child after 6:40pm, mind you we arrived at promptly at 6pm, and I can't imagine any child would get a 40 minute haircut. I've gotten very good at detecting lies when it comes to Noah's special needs. Make an excuse - any excuse so you don't have to help the "special kid".... honesty I think would hurt less than the lie. Noah has never had the same hairstylist anytime that we've went, but maybe I need to start a relationship with just one hairstylist that feels comfortable helping us and just go to that particular one each time. Ironically I didn't come home in a heaping mess of tears, maybe it was Noah's successful day of kicking and grasping, or maybe it was Chris' lovingly rubbing my neck on the way home to silently say I understand you're hurting and I want to make it all better - it certainly isn't because I am developing a thick skin to the cruelty that is out there. I am sure if I dwelled on it more this evening the sting would cause a good cry.

I feel the most badly for Noah as cognitively he is very aware - and I mean super aware, he wanted a haircut, and did not understand why we were leaving without one. Uncontrollable tears and screaming as we packed him back in the car. We pulled over at Home Depot even though we needed nothing there, just to make him feel like we had a destination and a purpose. He stopped crying immediately and was soothed that we were entering a store. Oh, how I remember the days when it was the opposite and I couldn't take him anywhere! Nonetheless, we had found a way to soothe our distraught child who was looking forward to a haircut and didn't get one. Thank goodness Luke has the disposition that he does, he sits on the sidelines very quietly as Chris and I just do what we have to do to make things work for Noah. For tonight Chris and I think will try to have a mutual laugh over Noah and Luke fighting in their own way over a car toy... and start over again tomorrow.



Love,




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