Friday, October 30, 2015

Naked & Afraid

Snow made soft powdery drifts along the edge of the lawn.  Noah had just turned four months old.  The winter's cold stung as if I were outside walking around in the frost, but only I was indoors and the sting I was feeling came from waiting at my door for a delivery.  The delivery no one ever really expects to have to accept in their lifetime.  But there I was standing at the front doorway watching condensation slowly creep up the glass of the door and glancing at a crying Noah who wouldn't soothe despite my best efforts, in a rain forest bouncy in kitchen.

The sliver sedan pulled up in my driveway, and lady hurried to the door with her footprints etched on the ground.  I didn't know what to say.  The only words I could say that rolled off my tongue  - "Thank you." 

"Think nothing of it." the lady with this beautiful and colorful scarf replied as she hurried back to her running car that was still heating for warmth.    I sat the box on the floor and opened the four folded edges to examine it's contents; a package of baby diapers, wipes, a gently used purple caterpillar alphabet toy, seven canned goods, a package of pasta, a gallon of expired milk, a loaf of Wonder Bread, a dozen eggs with one cracked in the carton, a block of cheese, a pound of potatoes that had just started to grow ears and started to root.   And I sat on the floor with one incredibly grateful tear climbing out of my left eye.  With the knowledge that I had reached a level of poverty. 

The thing about poverty is no one ever imagines themselves there.  Before Noah's birth I had three really successful jobs.  Not because I financially needed them all, but because I loved the financial freedom and security that it brought to my life.  A secure nearly decade of my life dedicated to the State of Colorado's Judicial System,  a call service representative dispatching nurses at all hours of the day on weekends and in the evenings during the weekdays, and I owned my own transcript business.   Knowing that I had a baby on the way who would require a lot of night time hours, I let go of the call service job two months before Noah's birth knowing financially we'd be just fine if I did.

I didn't see what was about to happen on the horizon.  God didn't foreshadow it for me.  My plans, hope and dreams would be forever altered that December day in 2008.   In my mind I prepared myself for the biggest Christmas gift of my life - our first born son.  I was nesting like all moms to be do.  Counting down the days, hours and minutes until I could hold my new bundle of joy in my arms.  I was preparing for this blissful event.   But the day of Noah's birth changed the course of our lives forever. 

Noah was three months old when I finally came to the realization that I couldn't return to work.  I lacked the ability to find the words to pick up the phone to tell a Judge who was really the best boss I ever had that I wouldn't be returning to work.  Instead I took the path that I thought would be less painful, which was to write my letter of resignation and submit it to Human Services.  I know that my boss deserved hearing it directly from me, but I knew I couldn't get through it without being a mess of tears - something that wouldn't have been at all professionally characteristic of my hardworking and dedicated nature. 

I was scared, there I was unemployed, I still had my business which crumbled beneath me too since I couldn't dedicate the hours needed while caring for a medically fragile child.  Business disappeared in a matter of weeks and that was gone too.  I was left with a large Cobra insurance payment as a result of my resignation nearly $700 monthly, and we were trying to survive on a single income with my husband's job as a truck driver.   Noah's medical bills started rolling in.  As a result of an incompetent hospital social worker Noah's Medicaid would only back date to three days after he was born.  The first three days weren't covered, a mistake due to the caseworker failing to timely file the application. 

Our savings was depleted quickly.   And before I knew it I was trying to line up all the help I could find.  I had to swallow my pride - and swallow it hard.  My independence felt shattered, my self-worth felt non-existent, my identity as a successful person in life was gone.  I found an organization willing to help me through the first year with baby supplies and food - There With Care.  They became my life-line for a long time, even coming to me in snow storms so I would have food, as I patiently waited by my door for the drop off.   When that went a way, I turned to finding food at a local Catholic Church, but then their program went bankrupt and I lost that avenue of support, I even was even forever thankful for my neighbors who detected our struggle and would sometimes bring us cooked meals or my Mormon neighbor who would bring me food from her church.  We found ourselves applying for TANF and WIC trying to limp along the best we could, but denied applications because Noah's daddy made $40 too much monthly disqualifying us from full government assistance.

You find yourself dealing with the rollercoaster of emotions that come along with the health complications of your child and feeling completely kicked to the ground with the loss of security...

And then the judgments start to compile.  People who think you aren't worthy of being able to buy soda, sugar, or even steak at the grocery store if you or your child is receiving any government benefits.  You become viewed as a lazy low-life. Here we were with a child that wouldn't be accepted by society any more than we would be. I'd love to tell you we somehow dug our way out.  But the truth is there is no real complete digging out.  For thousands of special needs families we are merely existing and doing the best we can do moment to moment.  Our children's costs are so excessive, and quite to popular belief SSI and Medicaid don't even begin to really take the edge off of what severely disabled children like Noah need.  We trade new shoes that don't leak, a full refrigerator of food, or a full tank of gas for trying to pay for medical supplies like special soaps, saline swabs, pulse ox machines, suction machines, thermometers, toothette swabs and therapy costs for therapies Medicaid doesn't feel are needed, or equipment that Medicaid denies because it's considered a non-covered benefit, non-medical necessity or in the most painful excuse - because they feel a child has no restorative potential. You feel naked and afraid.  The parent in you says hock your life to care for this child.  Because that is what any good parent would do.  Give up anything and everything you have to provide for this little life that deserves all that you can give.  That is what parenting is supposed to be about.  The most unselfish form of love exists between a parent and child. 

It's always been in my nature to work hard.  And I'm still doing that.  Noah is my job now.  And I try to invest my positive energy in making a difference in the lives of those I touch.  To make others know and understand they are not alone, that there are many of us walking this unexpected journey that often forces the majority of us into poverty status.  None of us thought we'd be here, it could happen to you, it could happen to anyone. 


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

Wednesday, October 28, 2015

The Barefoot Challenge

Ever wonder how you change a disabled child's incontinence underwear and diapers of Noah's age and size?  Wonder how we change his clothes or pants if he gets sick and vomits on himself, or dribbles food on his pants and shirt and needs to be changed while we are out?  Or how we change his clothes when he's been at the pool and is wet? We can't fit him on a baby changing table anymore.  He's too big.  For parents like me we, sometimes can use a wheelchair if it reclines but that is also very difficult to do.  Special needs families are often left to the only choice possible the stall of a bathroom floor. 

Can you imagine how that feels to have to lay your child down on a dirty, yucky, often soiled and soaked urine covered floor? Knowing this is the only choice you have to change your child.  It's a terrible feeling.  Sometimes we can find places like an office if someone takes pity on us, sometimes a first aid station... but in many cases we can't and we're on our own.  At restaurants, at grocery stores, at sporting events, the theater, the zoo... we could be anywhere having to do the best we can, which leaves many of us at the mercy of a public bathroom stall floor. 

A little over a year ago I wrote about a little girl and her mother that I tried to help at the zoo when she was changing her disabled child on the bathroom stall floor and the toilet next to them backed up and overflowed and flowed under to their stall, covering her daughter's hair in sewer water.  To this day I still think about that moment every time I go to the zoo and pass that particular bathroom.  My heart is still heavy from the memory of that happening.  And I think about that mom and little girl often and wonder how they are doing.  Change only happens if we work hard at it.  If we are loud enough to get the world to hear us.  If we ban together for a cause, and talk about it. 

Yesterday I was challenged to participate in The Barefoot Challenge - a challenge where you go barefoot in a bathroom.  Would you want to take your shoes off and walk around in a public bathroom?  Pretty gross thought right?  Now would you want to lay your own child down on a floor that you don't want to even take your shoes off on?  I'm guessing the answer would be no.   Moms all over the world are accepting the challenge to take pictures of their bare feet in bathroom stalls to help bring awareness to the need for a Space to Change

The UK is far ahead of the US with this movement.  And we need to start lighting a fire here right here in our own backyard.  We need to be demanding Spaces to Change at local airports, at grocery stores, business, restaurants, large event centers... we need to be able to change our children with dignity and respect.  Not on the floor of a bathroom stall.  They are not lesser, they deserve better.  I hope you all join me in participating in The Barefoot Challenge.  You don't even have to have a child with special needs to show your support.  Get out there take off those shoes and take a picture and post it with the hashtag #barefootchallenge

And feel free to challenge all your closest friends and ask them to take a picture in support of this movement.  Together we can make a difference.  I want to show you all how we can inspire change if we work together for a common cause.  Join me in helping make these changes for children with special needs like Noah. 

To download your campaign kit and learn more about the Space to Change Campaign click here


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

Tuesday, October 27, 2015

Just A Star Trying to Light Up The Dark

My blog posts have been sporadic - not a indicative of nothing going on, but rather too much happening around me at times that I don't even know sometimes how to process it all into words.  I have all these burning fires that I can't seem to extinguish and these fires keep sparking new bigger fires.  I'm overwhelmed sometimes trying to keep up the good fight... or whatever you'd like to call it.

Noah's CCB decided not to appeal his pillowcase appeal win.  I was holding my breath waiting for their deadline to pass to file an Exception to Initial Decision, something I fully anticipated and expected they'd do.   I kind of wonder if they just forgot or if they intentionally threw me a bone.  I have so many worries about Noah in the night at the moment.  His stridor and breathing is different when he sleeps, and his sheets will occasionally have staining on them, which can vary in color, sometimes white, yellow or clear.  He's not sick, and we've ruled out ear infections at the doctor. It could be acid reflux, could be secretions he isn't processing well at night, could be allergies either seasonal or to something in the house... I'm hopeful that maybe the increase use of the anti-suffocation pillows now that he's been allowed pillowcases may help to try to elevate him.  Sometimes I'm really at a loss, I don't always know how to fix the problem, but it does keep me up at night not only trying to solve Noah's sleeping patterns but to also watch him like this hawk glued to a barely working baby monitor.  I've been trying to nurse this monitor along as they don't make this model anymore which will cause me to buy two units instead of one so I can watch Noah in multiple rooms - with two screens.

I recently received the date for our next appeal regarding sensory clothing from the Administrative Law Court.  It's in December shortly before the holidays.  I always seem to have something legal to deal with in the month of December for the last seven years.  It complicates the season for me, I'd be dishonest if I said it didn't add to the weight that I feel at Christmas.   This Notice of Hearing procedure is different from how all the appeals that I've ever done for Noah have been handled.  They have scheduled it at the OAC - (Office of Administrative Courts) locally in my county.  And it appears they want me to appear and then do telephone testimony from that location.  Previously, I have been able to call in to the courts and present my case and testimony from our home phone while I care for Noah and his little brother - which don't get me wrong is hard too when you're parenting and conducting putting on evidence as to why the State wrongfully entered a denial against something Noah needs.  But it's just what I have to do, not matter how difficult it really is for me.   I put a call into the Courts today for explanation of the change in procedure, they say this is standard although it's the first time I've ever seen an OAC scheduled hearing.  I suppose I'm a tad leery about this next one as I don't trust the State's intentions.  I feel like the tables are very much turned against Noah because I have become a strong advocate for him.   And I always feel like I'm alone in all this.  No one to back me or be in my corner to help me fight through it.   This is all such an exhausting process just to help your child. 

And because apparently because I can't seem to escape courtrooms these days when it comes to Noah, I found myself last night at a public hearing regarding a proposed Verizon Wireless Radio Tower which they want to install practically in my subdivision.  Radio Towers can come with a variety of opinions but generally  you're either on one of two sides.  You either feel they are safe and no big deal to have in residential areas and could care less about them being built on top of you, or you have strong feelings that they do not belong in residential areas and can create a multitude of problems, from health concerns, to reduction in property values, to excessive noise, to it being an eye sore to look at in your backyard.  Interestingly enough that even though there are a wide variety of health concerns that are linked to radio towers in residential areas, including but not limited to altering DNA, Metabolism, Genes, Hormones, Headaches, Memory loss, Cancer, Birth Defects, Heart Conditions and Alzheimer's, a City and County Board is prohibited from taking any potential health factor concerns into account during an approval or denial process of a proposed radio tower site.  Government can be really great at making it an unfair playing field.  However, as a mom to a severely disabled child and one that has a severe sensory processing disorder, there is no way that Noah could handle the continual sound that a radio tower so close to his home would emit, Verizon could not guarantee that the tower wouldn't necessarily run interference with his medical equipment or video monitoring systems that we need for Noah, and Verizon couldn't disagree that our current contact with 911 and calling for emergency situations for Noah either by landline or through the use of our own Verizon wireless cell phones was not problematic.  The really sad thing about all this is they want to use a church site to build a tower.  They would pay the church a monthly rental fee to house their radio tower, the church wants the money... desperately in fact claiming they will go under without Verizon's money.   Verizon seeks out churches for this very reason because they have a higher zoning laws due to cathedral-like structures so they try to sneak in these 52 foot towers on church properties frequently.   I never thought however, I'd have to battle to keep one out of my own neighborhood. 

But that's exactly what I was doing before a board of County Commissioner's.  Pleading with them not to increase my worries and concerns as we can't pick up and move again.  We moved twenty-seven months ago to this home, something I never wrote about because that too came with it's own pain that I couldn't put into words at the time.  Nearly two years later I'm finally coming to terms with the circumstances surrounding our sudden move.  And now I'm trying to modify a home to meet Noah's needs.  I'm doing the best I can do to make this home a safe and healthy environment for him. 

The County allots you three minutes to state your feelings and opinion on an issue.  It's hard to cram everything you want to say into those three minutes but I did the best I could do.  Other neighbors joined me.  None of whom I knew.  It's hard to get to know anyone when you're home-bound caring for a child like Noah.  Even though I'm surrounded by lots of neighbors it still feels like I'm not, I know really none of them.  I was glad however that I was not alone in my feelings and that not a single neighbor was in favor of this proposed radio tower.  The City and County came back with a decision of denial, but it's not over yet.  Although they are recommending a denial the County has a final hearing on November 24th to determine if that recommendation is appropriate and within reason and should be finalized - appeals like with anything I'm sure could also happen.  So, yet another court date looms on my horizon. 

Cumulatively, I'm so tired.  I'm more tired I think than I have been in years, my body is screaming at me to rest, but my mind says don't you dare - think of Noah and do what you must do.   I'm also I suppose a bit devastated too with recent word that a nearly two year project that we were working on with a media source with Noah is likely going to get scrapped.  I've invested countless hours all with the hopes of finding some sort of peace at the end of it.  And again I feel restless, and like I'll never be able to have any conclusion or closure that will ever feel good. 

"One must still have chaos in oneself to be able to give birth to a dancing star." Friedrich Nietzsche


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

Sunday, October 25, 2015

It Only Gets Harder

It was the eve of Noah's father's 40th birthday.  Fall heavily upon us, leaves dropping faster than I could count them as they drifted peacefully towards the grass.   Chris and I were outside for a moment evaluating the weather changes as rain was in the forecast.  His eyes heavy with a touch of sadness could have spoken what I already was feeling too.  The understanding that we're both getting older - quickly.  And none of this is getting any easier.  In fact, it's only getting harder.  We don't often have conversations about it.  But it's always there never far from the surface of our daily thoughts. 

A growing child that requires a lot of care.  More care than he ever even needed as a baby.  We can no longer make due with baby strollers and toddler bath tubs.  Now all of Noah's equipment is specialized, most customized and costing thousands upon thousands of dollars.  Sometimes if we're lucky Medicaid will fund some of it, but more times that not, denials hit us left and right.  There are no more lines of credit, nothing to stand between us and the deep blue sea.  No financial line of defense. And no way to really financially keep up with Noah's needs. He has specialized diets and purees, medical supplies that Medicaid doesn't cover; saline swabs, toothettes, special soaps and creams for his skin... the list is endless. Then there are the big things Noah needs, a stand to roll his adaptive chair from room to room, an estimated cost of nearly $980, A bath chair that exists in the UK that would cost about $4,000 for me to get here for him, then there are the things that would allow Noah to participate in family activities; a specialized custom Axiom Improv Seat with Abductor so that we can walk and run with Noah, a sensory play area so that he has something to do on the floor other than shred large coloring books that I get him from the dollar store, his out of pocket therapy costs, some therapies being abandoned altogether because there is no money... and the list goes on and on.

The worries mount as the years go by.  We can't plan for a secure future, not for Noah - not for any of us.  There is no life insurance policies, no thriving retirement accounts, no burial plots, no savings accounts.  Nothing.  We have nothing and will always have nothing.  Which is hard for me to accept as once upon a time I built a nest that was filled with lots of security, I thought that I was prepared for rainy days and hard times should I ever encounter them - but there is nothing quite like the perpetual storm that hits you on the special needs journey. 

Chris positioned himself on the outdoor bench that sits on our patio.  A place that he sits often with Noah nuzzled and cradled into his side for support.  A man that wants nothing more than to do the best he can for his family, his blue eyes with a hint of gray in the light of a cloud covered sky looked worried.  I lacked the proper words to ease his pain and concerns, the fear for Noah's future.  I feel it all too. 

We both sometimes catch ourselves dreaming beyond where we are.  But know there is no way to ever get there.  It's a bit like being continual state of being stranded.  And it weighs heavy on any parent when you fall short from meeting your child's needs.  And we're of course also trying our very best not to short change our typical child along the way even though he has an older brother who's monthly expenses are the equivalent to a second mortgage.

Feeling the seasons change also reminds us that the holidays are fast approaching, Thanksgiving and then the ultimate gift giving holiday... Christmas.  The holiday that always hits me emotionally the worst since Noah's birth.  Yet, you probably wouldn't know it, as I camouflage it well.  I've become a master at smiling on the outside when I can be crumbling in the inside and continuing to sing those holiday tunes.  I can walk around like that without anyone even noticing.  It must have been on Chris' mind too as he lowered his head to look towards the ground and said "let's skip giving each other gifts this year so we can just focus on the kids."   He also knows how important it is for me to give five surprise gifts to other special needs children each year and that I don't want to have to give that up. 

And it's all very true, those who generally have the least give the most.  I gently nodded in response to his suggestion  in agreement.  There is nothing more that either of us really want other than to provide for our boys - and all the things that are always out of reach for Noah. We know it's only getting harder, but we're trying as hard as we can to grow stronger.


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

Wednesday, October 21, 2015

This Is What Special Needs Homeschooling Looks Like

Noah officially hit the age where mandatory declaration was required by the State regarding his educational status.   My line in the sand of do we send him off to a public school or do we homeschool?  Really the answer for us has been really apparent for many years.  Noah was never comfortable in a school-like setting.  I tried for years unsuccessfully at a early learning childhood center that incorporated both typical children and children with special needs and Noah couldn't even handle fifteen minutes at a time with a classroom full of peers without some really bad displays of gagging and vomiting which for him is how he displays his sensory processing difficulties.   And there was nothing that ever could get him past it. 

Then there was a period of about five months where I'd get weekly emails with some kind of germ circulating warning parents; hand, foot and mouth disease, lice... that happened several times, whopping cough, chicken pox... and I was so not in the mood to expose Noah to any of that.  A simple cold or illness for a typical child can be super scary for a child with special needs.  A cold just isn't a cold for them.  And we are really honest and upfront even with asking his therapists or others coming to the house to not come if they are ill or have been around someone ill.  Noah's well being depends on it.

I've also really never had a desire to add one more battle to the many battles I already deal with in a day and never desired Noah to have an IEP.  And the reality is that Noah's daily needs and care are really high.  And that I just don't have a huge amount of faith in PARA's designed to handle the care of a child like Noah in a public school setting.  It would take someone a really long time to learn how to care for Noah and all of his individual sounds, cries, expressions, how to safely feed and give him drink, how too soothe him, how to deal with sensory issues... the list goes on and on.   Someone would literally have to shadow me for months to really learn about what he needs on a daily basis and how to care for him.  Mix that in with the occasional horror stories that you hear on the news of children facing abuses and in some cases injuries sustained either by peers or professionals, and worst case scenarios, being lost on a bus for hours on end or forgotten altogether on a bus and passing away until they were finally discovered at the end of the day.   And I just felt like that wasn't for us. 

That's not to say that other parents feel quite differently and that inclusion is a primary goal in the special needs community.  Or that some families have fantastic and amazing out of home schooling experiences. I still love the idea of inclusion and we're able to do it a bit differently and still have it work for our family.  We still can coordinate field trips with other homeschooling families and even local Charter schools willing to include us.  

We made the decision to hold Noah back a year, and bump Luke up a year so that both boys are starting Kindergarten together.  Which is super I can teach both children the same curriculum at the same time which I think will be really beneficial and helpful for Noah's learning experience.   And I'm sure there will be people out there with a world of opinions on why you should send your child with special needs off to school or why or should at the very least send you typical child off to school.   Which is okay, what works for one family like ours may not work for the next.  This happens to feel like a really great decision for our family and the boys are really loving it. 

We're doing a bit of Homeschooling Waldorf style.  Which really feels like a great match for a child with special needs like Noah.  It's a great combination of life learning skills mixed in with educational learning experiences.  It feels natural, wholesome and comfortable for us.  Of course it means that I'm adding to our daily line up of therapies, appointments and now balancing school, but it's all falling into place.  And our decision to homeschool has really eliminated the stresses that I otherwise would have compounded on myself with Noah being as medically fragile as he is. 

This all might sound like I'm in some way attempting to explain or defend our decision, but quite the contrary, it's merely all the factors that played a part in knowing that homeschooling was the best option for Noah and for his little brother.  We're having a lot of fun each day, and we get to schedule or day how we need to in order to make it all work.   All parents are natural teachers... so here's to our new adventures in learning!

"There is no school equal to a decent home and no teacher equal to a virtuous parent.”Mahatma Gandhi  


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

Monday, October 12, 2015

The NEW GoTo Seat Floor Sitter by Firefly‏

Noah has been playing around with the new GoTo Seat Floor Sitter by Firefly.   It's given me a chance to test it out and see what this product is really all about.  Certainly, the world has been waiting for news of a new design after the first two models, and were anxiously awaiting new options and supports.   The new model has really three obvious new features.  Bigger and stronger lateral supports,  the option of two different headrests, and last but not least, an optional floor sitter base.   The question on everyone's mind is how does it stack up against the first two designs versions by Firefly?  And does it really have the supports required for children with low, to fluctuating tone, to extreme high tone, and will it suit children who are lacking in head, neck and overall trunk control? 
The Evolution of the GoTo Seat by Firefly
Noah, as many know, is a severely disabled child.  At just two months shy of his seventh birthday he is unable to sit, walk, talk, crawl or self-feed.  And without postural support and help can only lay and roll on the floor.   Noah also lacks independent head, neck and trunk control and requires generally the most extensive supports possible.   His tone has a tendency to fluctuate where he can be floppy to carry or hold, but is very strong when he gets excited, mad, or is attempting to accomplish a task you'll see such high tone that it often makes holding him very hard, as he can make his body hard, rigid and incredibly stiff which can throw a caregiver off balance if they aren't aware that he has such high tone tendencies.  
So is the new GoTo Seat Floor Sitter suitable for a child like Noah?  And the answer is hands down, yes.   The new GoTo Seat ranges in ages 1-3 for a size 1 and ages 3-8 for the size 2.  The size 1 can accommodate children in weight to about 33lbs (15kg) and the size 2 can accommodate children up to about 66lbs (30kg).  It has two headrest options.  One is a more "advanced" accessory which is a contoured design that cradles a child's head that has the need for more head support, and a "standard" headrest that is still supportive but is a little bit less plush.  The most noticeably new feature is the floor sitter base.  It is an additional optional accessory that can be ordered alongside the New GoTo Seat.   The sitter base retails for $100.  And the seat regardless of the headrest that you desire retails for $375 for the size 1 and $469 for the size 2.   Still making it a low to moderate priced piece of adaptive equipment and staying with Firefly's price point mission to be able to provide these products to families without insurance codes and eliminating third party distributors and DME's.  Shipping also continues to be FREE! And it comes with a 1 year warranty, and a 42 day return policy which makes the product really risk-free should it for any reason not be an excellent match for your child's needs. 
You can see a video of Noah in the New GoTo Seat Floor Sitter here:  (You can also watch a full frame on Youtube by clicking on the title of the video.)

The New GoTo Seat is a bit like the other two designs in which it can be mounted to a chair, to a child's wagon, play car, or any other seated flat surface.  It does have some new elements such as thicker and more supportive side laterals that I think offer a child a higher level of comfort.   The headrest designs have certainly improved and are more suited for a wide range of children and needs.  Even with Noah's lack of head control, I do not need to correct his head when he's using it.  Turn knobs allow for easy adjustments in the back.  I only had minor difficulty with a turn knob and that was the lateral knob.  If you turn it too far it has a short screw which causes you to fish for the connector which is in the seam of center of the fabric.  It's easy to get to, but you do have to work at it a little bit to get it back into place.  Something that isn't a significant problem, but something to be aware of in case you unscrew it too far and need to put it back together again like I did. 
I'm not big on instruction booklets.  I'm not big on instructions on general.  They stress me out.  Build-it-yourself furniture even makes my head want to explode.  But thankfully the GoTo Seat manual is easy to follow and has great pictures to follow along with for set up steps since I'm a person who likes to bypass reading and just likes visual demonstrations.  For those of you unlike me who love to read instructions, they are written clear and detailed.  The floor sitter piece looks a bit more intimidating on first glance than it really is.  And someone without an instruction booklet I'm confident could set it up fairly fast. 

Of course in true Firefly style it arrives in a really pretty box, which makes you feel like you just gifted your child with something super fun and playful.  A lot of people are probably going to ask me what do you wish that was different about the New GoTo Seat or how could it be better.  I'd say I am kind of missing a carry bag or storage bag for it.  I'd like to take it to Grandma's house but I'd have to find a bag or a trash bag to carry it in to keep it clean while traveling in the car or to and from various places.  A really minor wish, and I just happen to love bags that have the Firefly logo on it for transporting and storing equipment to keep it clean.  I'm still trying to decide if I'd ever want more of a recline than a 10 or 20 percent option, I think the two it has will work well for most children.

Originally I thought I'd be disappointed with the advanced headrest, but I'm pleasantly surprised for it not being a headrest that is aggressive like the i2i headrest I think the advanced headrest does incredibly well.  I haven't had to correct Noah's head position not once when he's used it.   I love the room for growth.  Noah is smaller as some children with neurological conditions can sometimes be, but it has great growth potential for children that are older and larger than Noah.  I'm not so certain that the size 2 would be a great match for a traditional grocery cart, the size 1 would fit well and easily.   Really the problem would be getting long legs of an older child into a grocery cart more than anything. 
I like how the bottom material is really durable, it's a strong vinyl type of black material that makes sure the product does not slip.  I am not sure how well it will hold up in the washer, but I think providing it didn't hit the dryer it may do just fine.  And honestly I'm not even a bit worried as Firefly makes durable products and everything I have laundered so far has done really well.
Noah hanging out watching TV
Most importantly Noah seems to love it and thoroughly enjoys being in it.  We often leave it on the floor sitter base in the living room and he'll roll to it signaling he wishes to be put into it.  And that's really the most important part.  Us parents can sit back and sometimes review a piece of equipment but in the end how does our child really do in it?  And are they happy, comfortable and enjoying it.  And all of those factors get good check marks from Noah.  Overall, I think families and children will be pleased with the product.  Out of all three GoTo designs this one is my favorite.

I can still see a many children benefiting from this new design and I think it will make so many children with special needs incredibly happy this holiday season.  So make sure you tell family and friends this one should be on your wishlist. I have a feeling this new design will promote even more family participation opportunities and I can't wait for new fun floor activities to continue in the days ahead for Noah.   To learn more about the NEW GoTo Seat by Firefly click here.

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