Wednesday, December 30, 2015

Noah's 7th Birthday & Christmas 2015

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Noah had a really wonderful birthday.  He certainly made sure we realized it was his day as he required extra attention all day long.  There are some days when Noah is content playing by himself and gets annoyed when you pay him too much attention and then there are days when he's exceptionally needy and wants you to change out his DVD's every 1/2 hour, hold him, rock him, wheel him around, play games with him, and not leave his side.  His birthday was one of those clingy days.  And I'm glad his birthday was a day when he wanted extra love.

His Mickey Mouse themed day was sweet and he adored his birthday decorated cheesecake - a yearly tradition since Noah can easily consume cheesecake and is his all time favorite treat.  We sang Happy Birthday twice, because once for Noah is never enough.  He has such awareness now at age seven.  His realization of wanting to blow out candles but can't.  The urge to hold and touch a birthday cake... but can't because his waving hands will knock it to the floor... one of us lightly holding down his hands so he can do his best to blow out a candle, or bring the cake close enough for him to hold it.   The quest as parents of course to make a birthday as normal as any other child would be able to experience.

This was also Noah's first year in his GoTo Seat Floor Sitter by Firefly.  He's always had to sit in someone's lap to open gifts or be with us as a family on the floor.  But this year, Noah got the pleasure of unwrapping his own presents sitting on the floor and not having to be cradled in someone's lap.  It was a new experience both for him and for us and he really enjoyed it.  In fact, so much so that he was a bit upset when we couldn't keep him supplied in gifts to unwrap.   It made the world of difference for how he enjoyed his birthday and Christmas.  It is one of those products that you think how did I my child ever live without all these years?

Noah also was gifted with the cutest little cookies for his 7th birthday from Mia's Cookies.  We had the pleasure of meeting Allie, the owner, at the Birdies for Butterflies fundraising event earlier this fall.  She makes the very best cookies and it was so special that she thought of Noah and helped us celebrate his special day.  Airplanes happen to be one of Noah's favorite things, she even sent some Minions which Noah and Luke absolutely adored.  It's the littlest things that build the biggest memories.

Christmas came in a flash. I think both boys had a memorable Christmas. We genuinely owe thanks to countless people for providing our children with gifts under the tree.  Something we couldn't have done on our own without the loving support of our community and foundations.  Christmas blessings that made their holiday something I know they will cherish for years to come.  Noah has several favorites.  Of course the Minion Guitar that Santa brought that Luke insisted that his brother wanted; Beat Bo, Fisher Price Beat Lights, A Musical Mat, Piano Touch Pad and an interactive Bear that talks to him, a dolphin light and sensory bob frog.

This year was the year of the dinosaurs and superheros for Luke.  It's interesting to watch a typical child like Luke transition in toy interest, when Noah's very much stuck at age seven in a toy category that is interactive or deals with lights and sounds.  Cognitively Noah understands and he still has an interest in dinosaurs and superheros just like his little brother, but he has a hard time playing with them and can only bat them around on the floor or look at them when Luke temporarily abandons them on the floor within his reach.   I do wish though that we had the ability to gift both boys with age appropriate gifts.  Noah's to a large degree sometimes still feels like we lean on the baby side of toys.  It's not because his brain is developmentally in a baby stage - but because his body physically is.  There are so many things I'd love to make better for children with special needs - one of them being a growing toy line that is priced within a any parent's reach that caters to children like Noah who have physical limitations but the mind of a typical aged child so they aren't stuck in the baby toy isles their entire childhood.  

Noah ate a ton of food.  So much I still am amazed where is tiny little stomach put it all.  It was likely two adult servings pureed and he scrapped that bowl clean - and had desert.  It was a mixture of ham, heaping spoon of mashed potatoes, demi glaze, buttered carrots, 2 dinner rolls, 3 garlic and butter roasted brussels sprouts and 2 deviled eggs pureed together.  You might think wow all together how can that be good?  But it did taste wonderful as I always do a taste test before serving it to him.  And it was a really yummy puree.   People might not realize the efforts that go into making pureed meal combinations.  Things you might think might not be paired well can sometimes wind up making the best purees.  He even topped off dinner with Christmas English Trifle and Chocolate Cherry Pudding Pie.

Chris did he honors this year of taking down the Christmas tree and decorations, sparing me from all the work and maybe the flooding of emotions that comes with the holiday season.  He worked incredibly hard delicately wrapping each ornament in tissue paper to protect them and boxing it all up for me.   It offered me much needed relief.  Something so small was so big and I'm so appreciative of his efforts and help, it was like an elf came a long and just scooped it all up and made it disappear.  Everything still feels a bit out of order, but that is likely because my mind is working on overdrive.  While I think of marching into the new year, my biggest wish is to have less stress.  I'm not sure that's a realistic expectation when you're a special needs parent.  It's something every parent longs for, but by the nature of the battles we fight, the challenges we face to help our children live the best lives they can, to be their voice, and to make sure we're on top of every hiccup to make sure that all is okay - it's like having the weight of the world on your shoulders at all times.

But I'm trying to hold promise in 2016 that through the power of positive intention and asking for God to be my guide, I'll be accomplish amazing things for Noah and the special needs community.


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

Wednesday, December 23, 2015

Leaving Behind Six

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Perhaps I made the mistake of discussing Noah's birthday plans with him the right before bedtime.  Even though Noah is non-verbal and I'm having a one-sided conversation I often underestimate how much of what I'm saying he's paying attention to at any given time.  Casually mentioning his Mickey Mouse cheesecake would be arriving, and how we'd be decorating and having Mickey Mouse paper plates and napkins, and how maybe we'd order in food just for his special day seemed to have cost me much needed sleeping hours.  Noah was up until 1am before deciding to close his eyes to get just a few winks of sleep.  He'd go in and out of being whining to get our attention so we'd rush in to turn him over or see what was wrong, to celebrating with happy squeals as soon as we entered his room.  I suppose he thought we should get his party started last night.  Of course Noah's need to be disruptive in the night also keeps his little brother up, who is annoyed that he shares a room next to noisy Noah and then Luke starts his own late night drama feeding off of Noah's.  

Next year I think I'll just surprise Noah instead.  And not talk about all the fun stuff to look forward to the next day.  I'm not even sure I want to tell him what day Christmas Eve is - Santa will be doing circles above our house half the night because Noah will be up.

My attention and focus has been all over the board this month.  Per typical December style for me, it hasn't been easy.  An appeals hearing for another Medicaid denial, there is always a court battle I march fearlessly into, meetings, hearings, research and time invested in trying to protect Noah from a cell phone tower that was voted in by City Council that will be detrimental to running interference with his medical devices and put him at life-threatening health risk with his sensory processing disorder.  There are of course I think a host of other problems and neighborhood concerns that haven't been adequately addressed or considered with neighborhood and homeowner impact.  Yet at the heart of it is Noah for me, and I'm feeling helpless and beside myself.   Then there is Christmas, the heavy weight of the holidays.  And trust me I've done my best to pour myself a cup of eggnog and sprinkle myself with holiday cheer, but something still feels like something is missing.  I'm just simply muddling through it.  I've even asked God to send me a little relief and a hand up.  Even though I know it's in his timing, not mine.

Situations around me feel beyond my control.  A feeling that is not at all helpful in the emotional baggage that I still carry with me seven years later.   Although I do give some thought to Luke's birth on his birthday its not to the extent that I do it with Noah, and with Noah there's such trauma there that it's like picking at an open wound and making it bleed.  Does healing come in he number of years?  No.  And I'd certainly have a bone to pick with the person who says time heals all wounds.  I rather share the same sediments as Rose Kennedy, "It has been said, 'time heals all wounds.' I do not agree.  The wounds remain.  In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens.  But it is never gone."

Yet, the blessing shines bright which is Noah's life.  Seven years later for a child expected to die after being removed from life support, is bright, beautiful, healthy, thriving and most of all happy.  Seven beautiful, bittersweet, incredible years with this amazing human being.   He is a gift to all those who know about him, love and care about him.  He often feels like my guide to something much bigger than we realize here on earth.   Like he's the key to all of it. 

I decorated the kitchen with items my mom found at the dollar store for him, and I know he'll beam as soon as he wakes up... which could be hours from now since he partied into the night.  I sit here peacefully listening to the tick tock of a clock that hangs on our wall feeling like time is standing still but yet moving so fast at the same time.  I hope he has the best seventh birthday I can give him.


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

Monday, December 14, 2015

The Love in Santa's Hug

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Santa was always incredible in my childhood; but has been beyond exceptional in the childhood of my children.  It takes a really special person to be able to see past Noah's challenges, to love him anyway - to accept him anyway.  Santa brings this beautiful magic and Christmas spirit into Noah's life during the holiday season.   Noah has always embraced Christmas as his favorite time of year.  The time of year when the impossible always feels like it can become possible.  Where dreams become real and the magic feels endless.  Because of Noah's extreme sensory challenges and the need to keep him away from overcrowded public places that can breed a host of germs that could be a health threat for Noah, we always try to find ways to invite Santa into our home or visit him by personal appointment. 

Although I didn't attend my high school reunion this year, I still managed to reconnect with friends that were a part of my life years ago.   A high school friend named Molly had mentioned her father (who was our math high school teacher), was now Santa.  I'd like to tell you that somehow this was all chance.  But it's not.  There are so many things in life that we want to chalk up to coincidence but the ways in which we connect and situations that come to be are orchestrated by something much bigger than ourselves.  Molly, growing up I know had her own challenges.  She was born with a cleft lip and pallet, but that was never the first thing I seen.  I always thought Molly was very pretty.  Even to this day in pictures she's incredibly beautiful and doesn't at all appear to be aging! I imagine her challenges made her spirit as beautiful as her exterior.  And it felt really wonderful to reconnect with her.  She probably doesn't even know how much I cared for her all these years later. 

I honestly thought maybe it would be a long shot knowing how busy Santa is this time of year with his calendar I asked her if her dad would be willing to do a home visit for Noah and Luke.  Without hesitation she coordinated finding a time that her dad could be available to visit Noah.  

Math was never my strongest subject.  I was good at a lot of things, but math was never one of them.  And to this day I often find myself counting on my fingers trying to make sure no one notices and guessing at approximate percentages off when shopping sales.  Although I managed to pull off a great grade in his class because of my dedication to remain in the running for Valedictorian, I did struggle and had to work twice as hard as many of my peers did in order to pass tests.   I rather envisioned that Santa would remember I wasn't his strongest math student and would wonder how I was getting along with only being able to minimally add and subtract. 

Years later I don't think it mattered to Santa about math not being my best subject.  His eyes gleamed and his smile was big and bright as he seen the little boy he came to see laying on the floor when he arrived through our door.   We thought that Noah and Luke would both love to sit on Santa's lap together.  Noah gave it a great college try, but in under a minute on Santa's lap his signature sensory gag reflex presented itself.  Possibly an indication of being overly excited, or perhaps he didn't want to share Santa's lap with his little brother.  Some of Noah's sensory triggers are still a mystery to us.  

Santa didn't bat an eye, nor did he take it to heart.   He looked at Noah so lovingly and with tremendous understanding and decided that he'd simply join Noah on the floor where Noah was most comfortable.   Santa brought two books with him and a bag full of miniature candy canes.   He opened up his first book The Night Before Christmas and started to read to the boys.  Luke on one side, and Noah sitting on his daddy's lap on the other.   Noah's face lit up and he began to smile, laugh and squeal with delight.  Santa carefully showed Luke how to unwrap his mini candy cane and still have it partially in the wrapper so he didn't get his tiny fingers sticky.   Luke following directions from Santa and Noah giggling with every Ho, Ho, Ho. 

Magic filled our living room.  And somehow I felt like I could hear every angel in existence singing a sweet Christmas carol right into my depths of my heart and soul.   Santa finished his first book and then moved onto Olive, The Other Reindeer.  When you're watching this sweet interaction for just a brief moment in time all feels right with the world.  In all the mess of and complications the holiday season brings, there was this blissful moment with my boys and Santa huddled on the floor together.

Santa was so very patient and had explained that he had been to Children's Hospital earlier in the day where he was in a little room and was able to talk to sick children via a monitor in their rooms.  So he understood fully the gravity of what we were dealing with.  Children as often medically fragile as butterflies.

Luke is a bit shy and a tad cautious of everyone... including Santa.  Although he did back into a hug and told Santa that Noah would really like a Minion with a Guitar, and that he wants a Tonka Police Car, Polar Book and Five Avengers which he whispered as if it were a secret.  We're not quite sure how Luke knows Noah's wishlist, but each year he tells us what Noah wants.  I think it's brotherly telepathy.  Which is good because Luke sometimes knows what Noah needs or wants before I do.  Luke is a very serious child, partially I think because of having an older brother that has a severe disability.  He doesn't often kid around or joke and does not yet know how to lie.  His innocence an equal match to Noah. 

Luke was really inquisitive of Santa as to where his reindeer were.  Santa explained that his reindeer only fly once a year and that he was driving his Subaru until then. Luke and Noah seemed to like that clarification. Santa's goodbye hug filled with an abundance of unspoken words as I told him how thankful I was for his visit.  His simple, yet tender and warm reply was "I know."

Luke watched Santa drive away at the window, and Noah beamed with happiness. Maybe our Christmas will be really small this year, but it's so big in so many other ways.  Christmas is not for dwelling on all that you've lost but for counting the blessings for what you still have.  Remember to always keep a warm and open heart and spread all the joy you can all around you.


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

Tuesday, December 8, 2015

A Special Needs Christmas Nightmare: The Elf on the Shelf

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Let's be honest.  My life has a enough chaos to it.  

The ever popular Elf on the Shelf that seems to have taken over Christmas traditions well after my childhood came to an end, fills social media sites, newsfeeds and holiday pictures swarm around that ever naughty elf.   And he's never up to any good.  He's a royal pain in the ass.  He's spraying mirrors with bleach, he's picking on the family dog, he's eaten all your favorite m&m's that you were rationing until Christmas.  I mean really could he be any more of a special needs parenting nightmare?

Unless he's going to sprout some compassion and real help - not just reporting back to Santa like the mini stuffed tattle tale that he is, or helping me get up a thousand times in the night to turn Noah in his sleep or check on his breathing, or help me spoon feed him during the day, or play with Luke when Noah needs my undivided attention, calling SSI to bark up their Christmas tree, or threaten not to send Medicaid a Christmas card unless they waive the most recent over payment - then he simply isn't invited and I'm not giving him a key to wreak havoc on our household.

Facing the facts are important.  It's all I can do to put up the Christmas tree weeks before Thanksgiving because Christmas is a sensory treat for Noah, think about how I'm going to afford even just one adapted toy for him which is five times the cost of a toy that we'd purchase for his little brother at any toy store, and contemplate making Christmas cookies, sending out Christmas cards, and finding some sort of inner Fa-la-la-la.   The last thing I want to be doing is coordinating and reprimanding an overly precocious elf.  It's just not on my special needs parenting agenda.

Let's not forget the most important part of Elf on the Shelf.  He's creepy.  Even dressed up now in the Claus Courture with Elf Pets makes that elf higher maintenance than my child with special needs.  My child would take one look at him and guaranteed it would give him a sensory gag reflex.

Hats off to the parents that find him fun, weird and entertaining.  But this special needs parent is going to stick to the old school way and just let Santa handle the naughty and nice list without his little mischievous Elf on the Shelf.


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

Tuesday, December 1, 2015

Nessie & The Miracle Mat

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When we ordered Noah's first Nessie along with his PPod from Specialised Orthotic Services, I under estimated how big Noah was and ordered him a small one.  While it never fit Noah super well I did find ways to make good use of it, for as long as I could.  When you have a child like Noah positioning of any kind is always helpful - even it if it's something that is a bit on the small side.  Two years later, Noah graduated from the small Nessie into a large!  

For those unfamiliar with what a Nessie is and does:

"Nessie provides a novel approach to positioning during therapy simplifying the practicalities around such activities for therapists, parents and carers. The established range of primary positions associated with physical play therapy can all be achieved using NESSIE. This can include ‘tummy time’, sitting, side sitting and side lying. NESSIE is easily transported around, so you can always have it available at any time. The covers are removable and washable. The unique contours of NESSIE allow safe secure positioning."

And along with it came the Miracle Mat.  A customized embroidered soft mat that reminds the both of us to never give up on miracles.  It might sound silly, but that mat holds a lot of powerful significance.  It was an unexpected personal touch that represents the continued miracles in Noah's life.  Physically, he continues to work hard in therapies, working on gaining head, neck and trunk support, trying to learn to brace himself to sit if only for mere seconds at a time, trying to weight bear and hold his legs steady and straight in an assisted standing position.  He never gives up, and he never grows tired of trying.  His perseverance is amazing.

Noah's new Nessie also has another great feature that his smaller one didn't have.  It has a removable EVA foam cover that is fantastic to have on the Nessie to protect it from Noah's occasional drooling when he's on his tummy.  Easy to wipe clean.  It is the same foam material that his SOS bath seat is made out of and it's really great material.  Not only is it comfortable but it's really durable.  The new Nessie is heavy, but incredibly sturdy.  There is no way that it would ever tip over or move. 

The first few times Noah used it he actually was able to go from his tummy and flip himself over into a semi-propped seated position.  It gave him just the support he needed in order for him to find a different way to position himself.  It also is fantastic for encouraging Noah to look up and lift his head to work on head and neck control, while still offering him a soft landing for when his head and arms need to take a break.

There isn't one single product that hasn't just been absolutely incredible that we use for Noah from SOS.  In fact, I continue to hope and pray more than I can ever tell you that their merge with Drive Medical will eventually result in Specialised Orthotic Service's entire line being available for USA purchase and insurance funding.  I still dream of being able to get Noah the T-Max Shower/Toilet chair and the MSI Seating  System and Sleep Pod.  Right now the only products available for US sale are the P Pod, Nessie, Equipoise, Bath Seat and our Toilet/shower Seating System. Although, I don't think any of them carry an insurance code as of yet, so it's out of pocket costs.  It's my hope that Noah's Medicaid waiver will assist me in the new year with the roller base for Noah's PPod so we can roll him around the house without having to take him out of it to go room to room.

SOS also has great customer service and are really wonderful to work with.  I've enjoyed all my contact with them.  They are so prompt in answering my questions and helping guide me on making the best fit choices for Noah.  I appreciate their help, kindness and love for children like Noah, immensely.


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

Thursday, November 26, 2015

An Abundance of Thankfulness: Thanksgiving 2015

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“Whatever our individual troubles and challenges may be, it’s important to pause every now and then to appreciate all that we have, on every level. We need to literally “count our blessings,” give thanks for them, allow ourselves to enjoy them, and relish the experience of prosperity we already have.” Shakti Gawain

This is Noah's sixth Thanksgiving.  His seventh birthday peaking around the corner.  And each holiday season I get to enjoy one of the happiest souls to have ever been born.  Noah doesn't know of the outside troubles, the struggles that his family endures on his behalf, or feels sadness for his personal physical circumstances - he only knows that he's thankful to see mommy in the mornings, or hear his daddy's voice on the phone when he's missing him, or grateful for a little brother who helps fetch him toys when he cannot move fast enough, or a loving grandmother who brings him coloring books from the dollar store.

Noah's heart and mind are always in a place of love, understanding and most of all thankfulness for what he does have.  I don't ever feel that Noah dwells on what he's missing in his life, and if he does, it's occasional and brief. Most of all I know that Noah acknowledges and comprehends that he is loved beyond all measure and that we'd do anything to make him happy.

This year the weather is cold and it's snowing.  We're all comfortably huddled and snuggled in our warm home, with the heavenly aroma of Thanksgiving turkey cooking.  A small feast for four that came to be by the love from others.  And as a special needs parent, I give thanks for all incredible life blessings we've been given:

*Help from my mom who can occasionally offer me respite care so I can run to the grocery store or to the mailbox.

*Candy treats and care packages from friends across the pond, who continually make me feel loved and cared for.

*Those who send Noah surprises and gifts that make life better, easier and happier.

*Luke - who is the best little brother a child like Noah could ever want or need. I adore his sweet and tender ways.

*Chris, who tirelessly works as hard as he can to help provide for his family and who makes us all the center of his universe.

*My Keurig coffee machine that's hanging in there with me even though I am sure I overuse it daily. 

*For all those who are patient and understanding enough with me to give me the freedom to express myself without judgment on the best and worst days special needs parenting has to offer.

And the biggest blessing that we've all been granted the gift of being together. 

May your Thanksgiving be filled with an abundance of blessings and appreciation for all that is around you. 


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

Wednesday, November 18, 2015

I Still Matter

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There is never a day that doesn't have a type of challenge when you are a special needs parent.  You wake up knowing inevitably each day will be hard, no matter what comes along.  I've grown to accustomed to a level of acceptance that things are they way they are.  Although the assumption shouldn't be that my acceptance of difficulties means I've lost the fight in me or that my fierce desire never to give up has diminished.  I do grow weary - how can I not?
After spending over 14 hours on the phone in the last two days added to the care Noah requires and he attention that Luke demands at his tender young age, I have moments of feeling lost and without an avenue of successful direction.  It feels a bit like wandering in circles.  One problem seems to branch into several others and before I know it I'm in the middle of a complicated mess.  And this happens far more often than I wish it did.  A cycle to a large degree that keeps repeating itself - just with the origination of a different problem.

I received notification in October that due to Obamacare that the health insurance policies for Luke and myself were being terminated at the end of the year.  This forces us to enroll in another plan by December 15th.  I've had a broker helping me for years trying to navigate the cheapest healthcare plans she could find for the two of us; Noah receiving Medicaid and his dad receiving health benefits from work, leaving Luke and I to find private coverage.  The new plans were rolled out and the monthly premiums not only increased but so did annual out of pocket maximums and deductibles.  Plans pushing us well over $400 monthly for just two family members. 

My mind racing for a solution.  How to do I keep us having health insurance that admittedly Luke would certainly need if he catches a cold or gets an ear infection?  And God forbid I need a doctor so we have to have healthcare coverage as a safety net, not to mention Obamacare puts in place penalties for those without coverage.  We already are doing without dental care coverage.  I put my face in the palms of my hands, feeling desperate for a solution.  And then I started looking through a pile of papers that I have sitting on the kitchen island.  It's a pile that I keep filled with things I'm working on, sometimes things for Noah, or for other people in the special needs community.  It's much like a continuous research pile or things I need to get done.  Essentially my special needs in-basket.  Flipping through pages I stumbled on a printout of the IRS Notice 2014-7, 2014-4 I.R.B. 445, issued January 3, 2014. 

For those not readily familiar with the Notice it is a provision that states certain Medicaid Waiver payments may be excludable from income.   Special needs parents haven't really been sure what to make of this notice.  Does it mean we fall under this category for parental income CNA under this new rule since we are essentially saving the State money by caring for them at home and not asking for institutionalized care - thereby deeming Medicaid and CES income difficulty of care payments and as a result changing how we file our yearly returns?  Some parents feeling comfortable with the Notice have filed amended returns months ago, while others like myself have sat on the fence not really truly understanding the language of the Notice and fearing we could face an tax audit if we weren't one hundred percent sure.  

Yet as my fingers thumbed through that pile I kept going back to it.  Thinking it would totally change our health insurance predicament and that if we indeed fell under the umbrella of 2014-7, that Luke would then qualify for Medicaid alongside Noah and I would be eligible for a tax credit towards a individual healthcare plan.  Something that could save us hundreds of dollars in healthcare costs for the both of us.  I've always been a person who has to be completely sure before I do something.  I'm not a follower.  I'm very careful and calculated about the decisions I make knowing that everything I do and decide is important and could effect Noah and even Luke.   So, I consulted with other advocates in the community, and then ultimately picked up the phone and contacted the actual person at the IRS who wrote the notice.  I figured if I confirmed that I fell within the 2014-7 guidelines from the person who drafted it, then I'd feel comfortable moving forward.   I received that reassurance by way of that telephone call and then contacted our tax accountant so she could start the process of amending three years of tax returns and preparing on how to file our 2015 tax returns, which I hope will ultimately be our saving grace on obtaining affordable health insurance.

Our tax accountant indicated it's fairly easy to amend for State and Federal taxes based on the 2014-7 Notice, what still was unclear was how to handle SSI and Medicare tax, which of course left more calls to the IRS and ultimately trying to reach Employment Tax Attorneys and Chief who also participated in the drafting of 2014-7.   In the middle of all those phone calls I was spending hours on the phone and online trying to complete the online application through Connect4Colorado.  Ultimately, the application refused to let me complete it because as soon as typed in Noah's information the system recognized he already had Medicaid and terminated the application.  After hours on the phone with Connect4Colorado and their insistence that they remove Noah from Medicaid status and I simply just "re-apply for him later" with me demanding they don't do that because Noah would lose his waiver status and he can't be without Medicaid not even for a second. I was adamant that wasn't an option just to apply for healthcare coverage for Luke or myself.  A supervisor finally giving me a number to Peak as Connect4Colorado just is a third party agency.  Peak of course has this standard recording that says their call volume is too high and call back another time.  But you could call every single minute of the day for the next 30 days and get the same recording.  The State would be better off to simply leave a message saying all attempts to reach them by phone will be rejected.  That's the truth.  I'm not even exaggerating or being sarcastic. 

In frustration and near tears, I call back our broker who I know feels for me but can do nothing since most brokers refuse to work with the State because the State doesn't pay them even after many promised payments that are years overdue.  She can't help me but offers me a contact that she found for my local county with CHP.  My last potential avenue for help.  I call that person and immediately get a return call.  Incredibly nice, I'm told if I go down to my county's Medicaid office before 5pm and fill out an application in person I can bypass Noah's status as already being on Medicaid and the State will evaluate eligibility just for Luke and myself.  I arrive at 4:10pm after lining up care for Noah.  It takes a minimum of thirty days for a determination and I have less than thirty days to beat my December 15th deadline.  The clerk tells me I have to fill it out by 4:30pm (even though they are open until 5pm) I comply and race through that application speeding through the questions feverishly.  My handwriting clearly an indication of stress and time constraints.  I get back in line at 4:29pm.  I made it.  With a minute to spare.  The two available clerks where heavily engaged in Spanish-speaking conversations with the two people they were helping.  I patiently waited my turn.  Clerks even smiling and seeming to be overly friendly with the two people they were helping.  I of course having no clue as to the conversation since I am not fluent in Spanish.  I was called to the window at 4:36pm when it was my turn.  Both clerks jointly curt and cold and instantly their previous smiles for the people ahead of me turned into instant disdain telling me they were refusing to accept my application because they told me I had to turn it in by 4:30pm.  I said I was in line at 4:29pm and couldn't help that they were assisting people before me.  One clerk rolled her eyes in my direction as if I was a pathetic cause in front of her.  She said rules were rules.  I felt as if they both were looking down upon me as if I didn't matter.  The little white girl down on her luck filing for government assistance.  I couldn't speak Spanish to gain comradery.  I felt desperate, upset and railroaded intentionally so I pulled the only card I could.  Telling them that I once was a State employee too that had a ton of power when working for a Judge and that people like them is what gave State employees a bad rap.  Still they refused to accept my application telling me to walk out the doors of the building and place it a night box.  Something I couldn't do because I had to bring original birth certificates with me for the application and they had to make copies of those before I could submit the application.  I told her I couldn't come back that I had to find respite care for Noah - that they had to understand that I could not just come back.  Still with the evil stare down and no communication she took both birth certificates made copies that took less than sixty seconds and took my application stamped it in, and that was the end of that.  That's all she had to do.  Likely a total of less than a minute of a clerk's time when they were on a power play.  The State of course I am sure will be in touch demanding more information to accompany the application for determination at a later time by mail.  I expect the road to be long and hard.  And it may or may no even work out in our favor.  But I have to try.  I must at all costs to my emotional and physical well-being continue to try. 

I left that office holding back any display massive frustration. Finally letting loose in tears that were freezing and chapping my face as I walked back to my car.   Wondering and yelling at God literally if it would be too much to ask for just a hand up - just a little help here.  I mean I'm working my fingers to the bone trying to dig us out of all these problematic situations.   It only takes one life altering event to change things.  This spiraling road could happen to any one.  A cancer diagnosis, a catastrophic car accident,  the birth of a child with a life-changing diagnosis.  None of us are exempt yet people walk around like they are.  With an attitude that they are now better than I will ever be.  In the eyes of others I am at the bottom of the human pile.  Seen as having no value.  My story could be your story.  It could be anyone's.  Yet the compassion is never there.  It's as if everyone thinks I don't matter.  But I still matter.  I still do.


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

Saturday, November 14, 2015

Closing a Chapter When You Don't Know How to Begin a New One‏

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I've slowly been pushing myself to find new homes for all the equipment Noah has outgrown.  And he's outgrown a lot.  And when I say outgrown, I don't mean like how a baby outgrows a toy, or no longer needs a highchair or a baby bouncy because their gross motor skills have finally developed.  I mean he simply grew too big to fit into any of them, but still technically needs everything.

I found new loving homes for all of Noah's adaptive medical equipment that he has gotten too big for.  Most of it boxed up today to go to a home in California to a family that has adopted four children with special needs who needs them.  A little boy named Thomas will soon be enjoying all of Noah's old things.  It's just stuff right?  But in reality it's so much more than just stuff.  These things allow children like Noah to participate in the world around them, it adds to their quality of daily living and life, and in most cases is completely necessary to meet their caregiving needs.  And while it does my heart a world of good knowing that Noah's gently used items will help another child, a part of my heart is still heavy to have to say goodbye to all the things I worked so hard to get for Noah.  All of it out of pocket costs - and it all cost thousands of dollars to obtain.  I looked at it all thinking how hard I worked to get it all.  And I worked really hard.  Harder than anyone could ever  imagine.  Incurring debt, doing without anything and everything I could do without to make it happen, even his grandmother using her severance pay for a $1,700 adaptive chair for him at Christmas.

I think the thing I'm struggling with is the feeling of starting over.  I said goodbye to two bath chairs, a special needs car seat, an adaptive toddler bike, a Freedom Concepts Chill Out Chair, Noah's first wheelchair that I fought so hard to pay for because insurance denied it as a non-medical necessity, and special needs toddler therapy swings.  Admittedly, it's all been stored in the basement longer than it should have been.  In my mind maybe I imagined that I could still cram his long lanky legs and tall torso into them, even knowing truthfully there was no real way.   Or maybe I just couldn't get past moving forward and closing that chapter on Noah's toddler years and all that came along with it.  The biggest roadblock for me was knowing I had to close a chapter on all these things that were too small for Noah without having the power or the ability to move forward to replace any of it in larger sizes.   And it's much harder now.  Noah's equipment is much more expensive because larger sizes cost more.  And we've used up every resource we had.  And the list of things I need for Noah grows by the day...

Noah's needs aren't going to slow down, if anything they are increasing because what he needs for his age is expanding.  I'd be lying if I said I didn't think about it or it didn't feel like the impossible mission.  But it is just that the impossible mission, for us and for most all special needs families who are in the same boat we are.   And this kind of thing happens each time our children have a significant growth spurt.  There is only so much growth adjustments that are built into these pieces of equipment.  And eventually at some point you're forced to start over several times as a child like Noah grows and matures.  Their therapeutic needs and miscellaneous items they need also don't ever slow down.  It's not quite like buying a dinning room set knowing it will last you twenty years or more. 

For now I'm just trying to focus on knowing soon I'll get to see pictures of a another child using Noah's former equipment and that things are how they should be.  It should be about helping someone else when you can.  And the rest... well I have to just take it a day at a time as I feel my way through how to go about trying to start over acquiring all that Noah needs, most of which unfortunately is customized due to his high needs in larger sizes.


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

Thursday, November 12, 2015

All I Want: The Special Needs Parent Christmas List

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The holiday season is fast approaching.   I'm methodically planning the timing of the Christmas tree and re-arranging furniture to decorate for Noah's absolute favorite time of year.  Firefly, a special needs equipment vendor, recently posted a Christmas survey asking special needs moms what they would put on their Christmas Lists if they could ask Santa for anything.

Admittedly I was stalled for a really long time.  The problem being is really one of of two things.  My greatest wishes will always be for my child with special needs and two, there is tremendous guilt with even thinking about what you want because your wants turn into providing for the needs of your child above all else.  So, I had to really force myself to look at things hypothetically.  Let's just pretend for survey completion sake that all of the needs of your child are met.  He doesn't need equipment, he has all his therapies paid for... that it's all completely taken care of and there are no worries.   That would take the guilt factor out of thinking of something for yourself...

I took this practice test and said if Noah's situation wasn't as financially complicated as it is and our lives weren't as challenging as they are, what would you really wish for? 

Special needs parents are really like anyone else.  If you remove that our wishes for our children always come before ourselves, we'd likely want some of the same things other people want for Christmas... mostly.

We can dream really big like it'd be great to have stainless steal appliances and new shutter blinds... you know the big luxury items that Santa has difficulties stuffing in his big red back regardless of special needs.  Or we can wish for practical things like gas cards and car restoration and repairs, or we can go really simple like it'd be great if I could replace my spatula and non-scratching cooking wisk or could replace my teflon pans that seem to be flaking and causing me distress as I imagine my children's food becoming contaminated with fragments of teflon and wishing I had a fancy stainless steal set of pots and pans.  Most parents humbly wishing they had a moment to feel pretty or get a makeover.  I can't remember the past time I felt pretty anymore.  Life has become about pony-tails, minimal make-up because you can't afford any, shirts that have stains, are faded and torn, pants with broken buttons and socks with at least one hole... an entirely new wardrobe from somewhere that is not Walmart also sounds like a big stretch for Santa. 

So what would I put on my Christmas List if I could give myself permission to ask Santa for something without the guilt factor?

A personal chef and food delivery service who could help me prepare daily meals and be tailored to each member of the family's dietary needs.

A snow removal service, because there's nothing quite like the stress of seeing piles of snow laying on top of your child's handicapped ramp and driveway knowing there's nothing you can do to shovel while caring for your child. 

A really incredible shopping spree with brand new lavish wardrobe.  You know the kind where you didn't have to think about how much money you owed the bank relative to how many pennies were in your wallet.  The carefree kind of shopping spree without having to think about looking at a price tag on a sweater you loved.  Knowing you could just have it regardless.

A elegant dress and some place fancy to go and have dinner.

A lifetime gift of endless Starbucks or coffee delivery anytime you needed it... all day long 24 hours a day if need be.

Wedge Boots with Fringe.... (yes I seen you at Kohl's at can't stop thinking about you.)

A pamper package.  To a really fancy salon where they made you look and feel like the goodness you know you once were. 

Really exquisite artwork to hang on my bare walls and an free interior decorator that would re-do the entire house that knew my sense of style. 

A covered patio with skylights, because it's a lot of work for me to clean up Noah's sensory gag stains when the sun hits his eyes. 

I'd love place setting of 12 Fiesta Dishes, Bowls, Cups and Flatware... you know the kind that are free from lead and cadmium free glaze so I know that they'd be safe to eat off of. 

A stainless steal cookware set, with handles that stayed cool to the touch while cooking and a dutch oven, and cast iron pan, mini cupcake tins and brand new cooking utensils.  Maybe it would be simpler to ask for a really big Bed Bath & Beyond Gift Certificate!  

A new floor cleaner and mop so I didn't have to look like a sad Cinderella cleaning my floor by hand every three days. >treats, pastries, fruits, chocolates, petite cakes and keepsakes... something that put Oprah's yearly gift ideas to shame.

In-home yoga instructor and an in-home gym so I could get totally in shape for the physical demands of special needs parenting. 

A really plush, expenses paid, all inclusive family vacation resort, with a five star hotel and endless room service to find my center of gravity again way from therapies, appointments, emails and phone calls.  

I could probably go on and on if I really tried.  It was nice to think about it, if only for the half hour it took me to write about it.   Luke just kicked me in his sleep during his afternoon nap - a signal that I need to get back to reality and quit dreaming about all the lovely things I'd love to ask Santa for.  And really the most rewarding feeling of the season is giving and not receiving.  Special needs parents never feel short-changed at the holidays even if there aren't presents under the tree for us.  We have been gifted with the biggest gift already - our children.


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

Friday, November 6, 2015

Why I Continue To Hatch With Rejections...

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Many people in the special needs community have expressed disappointment that some of my creative ideas that I've submitted on a website called H.A.T.C.H. were rejected for consideration.   Some have approached me with questions of why am I investing time and energy into something that in their eyes doesn't ever have a chance of being produced.   I hope this post can adequately address some of these questions.

As much as I'd like to believe all my ideas are beyond brilliant, the truth is creativity is subjective and can be  very much in the eyes of the beholder.  I know that not all of my ideas are going to find success.  But at the same time I still believe in them.  I still think they have potential.   There could be lots of reasons why something doesn't work out.  It could just be timing, there could be financial considerations behind a decision... and it could be honestly that my idea just wasn't strong enough to make it all the way.  It happens.  It happens to the best and brightest of inventors and idea makers. 

Some of the world's greatest have been met with rejection but that didn't stop them.  Sigmond Freud was booed during a speech where he presented his ideas and still continued writing anyway.   Thomas Edison's teacher labeled him "too stupid to learn anything," and he went on to invent the light bulb - even after he failed over 1,000 times with his original attempts.  His most powerful quote "I didn’t fail 1,000 times. The light bulb was an invention with 1,000 steps."

And I'm viewing my rejected ideas in a totally different light.  I didn't fail.  Wayne Dyer, in fact suggested that "Failing is a judgment that we humans place on a given action. Rather than judgment, substitute this attitude: You cannot fail, you can only produce results."  Wayne Dyer himself faced rejection trying to get his first book published and later went on to publish over 40 books with 21 of them hitting the New York Best Seller List.  
*Note to self- don't abandon your hopes of publication, if Dyer can do it, so can you!*

I happen to believe that I have a lot to offer the special needs community - and that can look like a lot of different things - and it does.  I juggle a lot behind the scenes most of which people don't even know I do because I go about it silently, quietly and often as anonymously as I can because my soul doesn't crave recognition or a spotlight of gratitude for all that I do.  And I still believe in all my ideas even the ones that are rejected.  Maybe I need to fine tune them, maybe the timing isn't right... maybe those ideas will be born some other time.  Or maybe they'll never happen and I'll come up with something even bigger and better in its place. 

But the main reason I still keep hatching ideas, even if my ideas are rejected is because I know that the potential is there for something great.  And I can continue to challenge myself to inspire, create, and grow new ideas, that someday I may get the chance of making even a bigger difference for the special needs community.  Dare to dream even if those dreams don't always become a reality.  Keep doing it anyway...

So, some of my most popular ideas and the ones I really loved too, didn't make the cut.  I can still post the Camp n'Go and the Silverdale Saddle up on my wall and say that was my idea and I am proud of the effort.  I know I'm still a winner because I tried.  And Hatching ideas happens to be a lot of fun.  Don't be afraid to try. You just never know your idea could be the one that makes it.


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

Sunday, November 1, 2015

Halloween 2015: The Teal Pumpkin

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Well here we are years later and Noah's dislike for Halloween continues.   I had hopes - as I always do, that this year will be the year where the sensory challenges disappear.  No such luck.   We had a costume dress rehearsal earlier in the week to make sure everything fit and was going to work okay.  Noah and Luke were sent cute costumes from Ween Dream, a foundation that assists financially struggling families and children with special needs with Halloween costumes.  Luke was sent an Iron man costume and Noah's Spiderman.  They both really looked super cute. 

It's odd to look at a costume on the hanger and think wow these are huge they'll never fit my little boys.  And then realize that your little boys suddenly aren't so little anymore and grew when you weren't looking and not only do they fit, but they have no room to spare.   My first clue that Halloween wasn't going to go well was when Noah glanced at his little brother fully in clothed in his costume and began to gag at the sight of him.   Apparently Spiderman does not like Iron man. 
However, I did think maybe Noah was just having a moment, he's had a rocky few weeks and I'm trying not to worry, as special needs children are sometimes just like this.  It's an ever changing and evolving kind of thing.  That's why I still one day think maybe Noah is going to be able to overcome his SPD (or so I hope for his sake as it is genuinely hard on him.)

Luke being the incredible little brother that he is - and I really mean that,  took off his costume to make Noah feel better.  At the tender age of four he's so incredibly mature, receptive and understanding.   We figured maybe if we were leaving the house in costume Noah may feel a bit differently about it all.  But that didn't prove to be the case.   We opted to put Noah in a Special Tomato Stroller that we have had for years, thinking it would be less heavy to carry him up residential stairs.  And yes, we still lift Noah up and down stairs in a wheelchair so that he can participate.  Our bodies I know will hate us later for it.  I had thought about the Upsee, but in the dark I was nervous about not being able to see where I was walking well.  And Noah's Spiderman muscles would have been hard to cram into his Upsee Harness.
Noah & Family 2015 Pumpkin Carvings
As soon as costumes were on Noah gagged and threw up.  Classic display of how his sensory processing disorder presents itself.  He literally makes himself sick.   We cleaned him up thought maybe it would get better, headed out the door to our first house.  As soon as the neighbor opened their door, Noah threw up again.  Luke didn't even have a chance to utter the words Trick-or-Treat first.   We cleaned him up, went to the second house - same thing.  Door opened Noah threw up.  The homeowner worried asking us if we needed kleenex.   No one in the neighborhood has really met Noah - they see us out an about I'm sure but have no idea that Noah does this as a sensory defense.   So, they probably all thought we were taking a sick child out trick-or-treating which wasn't the case.  By our fifth door I told Chris to take Noah home and that I'd continue on alone with Luke so he'd have the experience.  

Thank goodness there are two of us in this together so that we can share trying to balance two children with different abilities and needs.   Luke and I on our 6th house stumbled on a Teal Pumpkin.  I certainly didn't ever expect to see one in my own neighborhood.  A teal pumpkin symbolizes a home that has non-edible treats for children like Noah or who have special dietary needs and can't eat candy for whatever reason.   We were handed a little bouncy ball for Noah which I put in Noah's candy bag that I was still carrying around with Luke.   It was really nice to see a teal pumpkin.  I guess it's just nice to feel thought of - what about those like Noah who can only eat purees and can't really eat candy or chew - they deserve treats too. 

There are some that I know who think that if your child has special needs like a peanut allergy, food allergy or special needs like Noah who can't consume candy or who have a gtube should be left home on Halloween because neighbors shouldn't have to cater to special requests or needs.  Homeowners actually getting offended if a child says "No peanuts please" or a child who can't say "Trick-or-Treat."  It's real and it's sadly still very much happening even as I wake up today and read about how people's Halloween experiences went.   Yes, maybe we should just keep them home, but we're trying to give our children this incredible and beautiful childhood just like typical children get to experience.  We want them to have memories too, not just I got left behind because the world is not a tolerant, understanding or loving place. 

I don't know if door to door Halloween Trick-Or-Treating is in Noah's future or not next year.  I do know that his sensory challenges can be dangerous for him - especially if he were to aspirate while trying to recover from one of his gag and vomit episodes.  But I really do hope that the teal pumpkin catches on even more in years to come.  That we see a growing trend of homeowners wanting to be a part of including all children the best they can. 

Here are some great ideas for Teal Pumpkin Treats for those curious about what they might be able to include:
Glow Sticks
Sidewalk Chalk
Bouncy Balls
Halloween Washable Tattoos
Activity Books
Plastic Spider Rings

And if you aren't up for painting a pumpkin teal, you can simply hang and print out this sign:

And although this doesn't apply to us specifically because we're now homeschooling, please give thought to your child's Halloween parties at school.  There are lots of children who can't eat cupcakes and goodies.  Consider doing two treats, a sweet and non-sweet so that everyone can be included.  I know you think it's not important if your child can eat a treat and why should you have to care about someone else's child... I get it.  I know it can totally put a cramp in your Martha Stewart perfect party planning.  But there are so many of us out there that have to sit on the sidelines.  Think of our children too, they matter I promise they do.


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