Friday, August 29, 2014

I Don't Belong Here

Bookmark and Share
Change is in the air.  The mornings are crisp and fall feels like it is approaching faster than usual.  Yet, we still have the occasional teasers of warm days misleading me on how much time I truly have until I'm saying goodbye to all summer blooms.   This means one thing to a mom:  prepare for fall appropriate clothing. 

All my coupons and discounts led me to land on the doorstep of Kohl's.  Armed with intentions of finding soft fabrics in cute boyish style.  There I was searching the section I've always shopped in, the baby & toddler isles.  I must have circled and toured four times before finally realizing that the sizes stopped at 4T.   Confused I thought well, they just haven't stocked a proper supply or they're recovering from all the back-to-school sales.  Slightly disappointed that I had to walk away from my quest I wandered aimlessly about only to look up and find a cute little vested hoodie that caught my attention in the big boy section.  I simply wanted to know it's price.  Upon closer inspection it was a size 5T.  I looked to my left and to my right.  All of it 5T.  

Instantly it felt like someone shot an arrow through my heart.  I can't be in 5T.  I can't be in this section - this big boy section.  I don't belong here.  I belong over there... in the baby... in the toddler section.  The confusion in my mind is hard.  And instantly I realize, that yes although your child has the skills of a baby, and you still feed him bottles, spoon feed him pureed foods, and change his diapers... he is the size of a young big boy.   I didn't like how it felt.  I hate how it still feels.   It's unfair, so terribly unfair.   While he's graduated into big boy clothing, Noah cannot do big boy things.  

Moments like this make me ache with how things should have been, a glaring reminder of more milestones that you and your child can't experience together.   Worried that other customers would detect the distress in my face and these smothering rush of feelings that came from nowhere,  I looked through the selection of folded shirts and pants.  I tried to seem interested, focused on what I came to do.  Buy warm clothing.   The graphics and prints were less than cute.   Everything felt like it had a tough edge to it.  Where I gravitated towards the sweet, tender prints of pastel blues and puppy dogs that lingered on the opposite side of the store.  But I can't live there anymore... here I am stuck in big boy clothing.  Nothing was soft, the jeans rougher than I wish they were for Noah's delicate skin, shirts that made statements that were bold.   But I managed to find some sweatpants and a couple long sleeved shirts that would at least get Noah started with long sleeves and pants.  

Still nursing these raw feelings I made it to the cashier, wandering without direction just trying to make my way to the car before shedding these stupid tears that you suck in and suppress as long as humanly possible so the world doesn't realize that you're not as strong as you want everyone to believe.   I probably couldn't have swiped my debit card any faster if I was trying to win a competition for the fastest payment.  And out the door I flew and into the car fleeing for the comforts of home, to hold that child in my arms, as I've always done since he was a baby, as I still do today. 


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

Thursday, August 28, 2014

Super Powers

Bookmark and Share
Special Needs Parents often joke that our super power is indeed simply raising a child who has special needs.  While that could conceivably be true to a large extent, it's been my realization that true super powers reside within my child.  With each passing year, I've watched Noah find ways around his physical challenges and growth of these incredible super powers.  Noah's eye-sight and hearing are phenomenal.  I mean better than the average human phenomenal.   He can see things in the distance before I ever do.  A plane in the sky that looks like a speck to me he can recognize, track and follow with such ease.   Vision therapists insist that brain injuries like Noah's are likely always associated with some level of CVI (Cortical Visual Impairment).  However, that hasn't been our experience with Noah.  His tracking and focus is spot on, and sometimes we even wonder if he's seeing things the rest of us can't.  

Yesterday, I thought I'd take a moment to troubleshoot Noah's Tobii Eye Gaze device.  He has a program called Sensory Guru, which is a series of eye-gaze games.  When you toggle between his talker options and Sensory Guru you have to disable a mouse-like feature which I can't seem to get down.  So I always try to work on it before I set it up for Noah as he isn't patient and it inevitably takes me a while sometimes to switch the settings back and forth.  Ideally, I need Tobii customer service support on speed dial.   I was in a bedroom at the opposite end of the house, and as soon as Noah heard me playing with it, he started throwing a huge fit because he wanted his talker.  

*Note to Self:
Next time shut the volume off first!

I tried to speed through figuring out what I was doing wrong, to no avail.  Noah's hysterics and tantrum growing larger with each second.  It was over the moment he heard what I was doing... with those super sonic ears of his.  I never dreamed he could hear what I was doing that far away.   I finally fiddled with it to the point of it recognizing my eyes, but triggering a pop up menu and circle guide that periodically wanted to magnify, but it was enough to get us by to stop his tantrum.  

Noah also has this uncanny ability to detect other people's movement, even if he's sleeping in his sleep safe bed which is a good four feet off the ground.   Without fail if I happen to turn over in bed, or get up to as so much go to the bathroom in the middle of the night Noah is up.  He senses everything!  It is almost as if he can sense or feel the movement no matter how quiet things are. We have a squeaky bedroom door that we leave open purposefully, the alarm that goes off at 4am that is set to a CD with birds chirping to make it sound as quiet as possible... none of it works.  He stirs, and wakes up to all of it. 

As Noah has grown older I've also found him cognitively working very hard on telling his body how to get around his limitations.  Noah has the ability to open and close doors with his feet, and can decide when he wants to close the door all the way so it will latch.  If you open the door he'll roll back and close it again because he wants his privacy.  He can open kitchen cabinets with his knees and legs, and close them with his feet and ankles.  He uses his face and chin to hold books and swipes with his hands to turn pages so the book can't get away from him.  He's very smart, and tremendously clever. 

Sometimes I just watch him in such awe.  He's finding ways around all these obstacles in his life.   And I love that he has the ability to out-think problems and things that are standing in his way.  I'm fascinated by his intentional movements and what he's telling his other body parts to do for him.   I suppose to some degree we all have the ability to compensate for things we can't do. 

Yet, I'd hardly say that things like me finding a way to reach an octave on the piano by habitually rolling cords because my hands were much too small to do it any other way (much to the dismay of piano teachers), even compares to what Noah is doing.   The level of his thought process and his heightened senses are indeed nothing less than super powers. 

The brain is amazing.  It has the ability to adapt to loss by giving itself a makeover.   The brain is able to navigate new ways of movement and thinking even when significantly damaged.  Researchers studying neuroplasticity know that our brains have the ability to change with experience.   Which is just one of the many reasons we are drawn to certain types of alternative forms of therapy for Noah.   We know that these therapy modalities are giving Noah the maximum opportunity to learn new ways of movement - his way of movement.  We are offering him the bridge to build new pathways.   And he's obviously building some super power pathways! 


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

Wednesday, August 20, 2014

Five Things That Are More Expensive Than Raising A Child With Special Needs

Bookmark and Share
Yesterday morning I was laying in bed nursing a Noah hangover (What we lovingly call the effects of up all night with Noah's needs), and while waiting for Noah to get up for the final time that day,  I turned on the television to the Today's Show.  A segment aired about the costs of raising a typical child.  It is reported that the average child born today will cost $245,340 to raise with a projected potential cost of inflation of  $304,480.  These figures are from the USDA's annual report, based on the government's Consumer Expenditure Survey.

Chump change I thought to myself. That's nothing compared to raising a child with a significant disability.   So here are five things that are more expensive than raising a child who has special needs:

1) Twenty-Five Hermes Birkin Handbags (Worth 1.9 million each) 
But just think about how stylish you'll look carrying all your child's medications and therapy notes!

2) Ten Harry Winston Ruby Slippers (Worth 3 million each )
The perfect solution to aching feet from carrying your child with special needs room to room.

3)  Seven Amour Amour Dog Collars (Worth 3.2 million each)
Have a service dog?  Yes they cost thousands of dollars so why not show your appreciation with these fancy collars one for each day of the week. 

4) Five Lamborghini Venenos (Worth 4.3 million each)
Finally a vehicle that puts the cost of an average handicapped van to shame! 

5)  Three iPhone 4S Elite Gold (Worth 9.4 Million each)
Just convince yourself that you'll get better customer service from insurance representatives and SSI if you are on hold using this classy phone. 

But here are the things that no amount of money can buy:

Appreciation of the smallest accomplishments your child worked so hard for.
Proper perspective of what is truly important in life.
Lessons you learned from all the pain and joys of special needs parenting.
The abundant blessings that come from your child being with you for another day.
Thankfulness that although life is not perfect, that you are all together.
Looking into the eyes of your child with special needs and feeling that powerful love.

The costs of raising a child with special needs is likely to push any average middle class family into poverty, but we're richer in so many other ways.


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

Thursday, August 14, 2014

The Leeway Line by Leckey

Bookmark and Share

When people think of special needs equipment they think of the big things... wheelchairs, walkers, standers... but rarely do people give much thought to all the accessories that comes along with all these types of equipment.  There is really so much to chose from these days, and it all really depends on what each child's individual needs are. 

Noah falls into a category of needing lots of forms of additional supports and is a comfort-seeking child due to his sensory challenges.  And you guessed it, all this of course means extra dollars, but it also means that I'm always on the hunt for awesome products that would better assist Noah with his already acquired pieces of adaptive equipment.

I was excited to learn earlier this year of a new harness and bib series that Leckey was working on, called Leeway.   Deep down I had hoped that this line would be a division of the Firefly line, simply because it would make obtaining these accessories tremendously easier than having to go through a third-party distributor and local DME.   I cannot even begin to express how much of a pain in the ass it is to deal with these third parties.  First, third-party customer service leaves a lot to be desired and when you are finally able to reach someone they point the finger back to the original manufacturer and tell you they can't help you anyway.   Not to mention the price hike they tack on to any piece of equipment you're seeking leaves you really in a position with most of it being impossible to obtain without insurance coverage.

But, thankfully Leckey comes with the reputation of having one of the top customer service departments that I've ever had the pleasure of working with.  When Ottobock refused to acknowledge that they were a distributor of the new Leeway line, Leckey stepped in and allowed me to place an order directly with them.  It will take some time to receive the harness, but I know it will be completely worth the wait.   I think eventually Ottobock will get a clue that they are a indeed a distributor of this line, and I think if you're in the market for a whole new adaptive seating chair that asking for these accessories to go along with it right out of the gate will be key. 

The Leeway bibs we've been using for a couple months now.  We love them.  Now days, everyone and their grandmother are making bibs.  Some are really great, others are so so, and some I could probably make better with a washrag and some string.   I happen to really prefer the Leeway line to some of the other ones we have tried because they are lined with a really soft fleece-like fabric, many other styles we've tried are basically a terrycloth and a bit scratchy for Noah's sensitivities.  For us I really like their bright solid colors.  They match Noah's Mygo Leckey seat perfectly and we use them primary at home during meal times.   However, other parents may gravitate towards themed-style bibs that display their child's personal preferences and likes.   I'm more a neutral kind of person and solid colors for us are easier to match to clothing. 

The bibs couldn't have come at a better time.  Noah has decided that he no longer wants a baby bottle before bed, and has demanded we convert him to a medical cup.  He's been doing fantastic with it, and its just his way of telling us he's growing up and obtaining more skills at the same time.  Noah has already had a bath before he wants his evening juice cup, so these bibs have been lifesavers in absorbing any juice that Noah dribbles out.  His clothes remain completely dry, and he's still ready for bed afterwards. 
Noah having lunch in his Leeway Bib
I'm really excited to see the Leeway harness when our order is ready.   Noah's current harness has stretched out over the years causing it to be less efficient, and it's a basic black neoprene.  I love finding things that are not only cute, but functional, safe and what suits Noah's daily living needs.  I am also pleased that equipment vendors are starting to go in the direction of family-friendly, happy designs.  Not all this cold black and grey  - dark colors that make your child's disability appear cold, sterile and harsh.  Things that are fun, that any child would want to have with or without a disability is an important consideration.  The one we picked to order for Noah was the dragon.  Because his Mygo is blue and the dragon would match.  And I'm so hopeful it's going to give him more support than his current harness is doing. 
The Dragon Harness

I wish all his adaptive equipment had these cute personal touches.   I hope it's a growing trend that is here to stay.  It is neat to see a hint of something happy put into these pieces of equipment.   Hats off to all the great ideas that are going into all these new and future accessories.  It's nice to feel like we have choices in styles and looks all the while offering our children the support, security and comfort they need.


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

Tuesday, August 12, 2014

We Can All Be Okay

Bookmark and Share
As the world has learned yesterday, Robin Williams, one of the greatest comedic actors of our time took his own life.  The internet and news media full of remembrance, disbelief and sadness for a well known life lost.   Firefly, a special needs equipment distributor posted a blog article today titled:  Robin Williams was a truly great actor, he spent a lifetime pretending he was okay.  The article can be found here

The article discusses the relationship of this tragic news as it pertains to special needs parents  and those with disabilities being "particularly susceptible" to feelings of depression.  "Nearly three quarters of families with disabled children have experienced anxiety, depression, isolation or family breakdown." 

I'm sure that statistically speaking that estimation could be even greater in number.  Especially in the earlier years when you are trying to adapt to "your new normal."  Still even throughout the special needs journey there are moments when this tremendous sadness can hit and overcome you like the force of a ton of bricks being thrown in your direction.  Pain so difficult it pierces your heart, makes tears come out of nowhere, and makes your feet feel like they could buckle underneath you.  They can be paralyzing moments of grief.  Grieving the loss of the life we thought we'd have, the loss of the life we thought our child would have. 

And outside struggles only compound these already delicate feelings.  Add insurance denials, fights for inclusion, battles to have your voice heard on behalf of your child, and the stigma that comes with being a family who has special needs, could easily intensify how hopeless things sometimes may feel.  Yet I'm convinced that special needs parents hang on extra tight knowing that they can't jump off the planet no matter how difficult things may be or become, because in the end they are all that their child has.

Appearances can be deceiving when it comes to how a special needs parent is truly doing.   We're fabulous about smiling on the outside when we feel like we could die in the inside.  We can appear strong as we're lifting cumbersome and heavy equipment, never letting on that we've injured our back in the process or are covered in bruises.  We can pretend that it doesn't hurt when we're stared at, or cruel comments are made to us.  Or that we're sad that no one invited us to a party.... because our child is so different from the rest.  We are great pretenders displaying that we can handle everything and anything that comes our way.

But that doesn't mean that we all couldn't benefit from a little pick-me-up from time to time.  Usually the universe is fantastic about sending me hope when I'm low on happy fuel.   I get tender messages like the one yesterday from a special needs mom, Grace, that I met at Mother's Tea earlier this year.  A simple card, in the mail.  She started out the letter with "The gentleness of this young lady reminded me so of you."  The tiniest of beautiful gestures can be so uplifting.  Someone that took the time out just for a moment to think of you.  That's sometimes all you really need.  
A beautiful card from my friend, Grace

If you know of a special needs parent in your life or someone close to you living with a disability.  Just take a moment to drop them a note to say hello, call them and tell them one beautiful thing today or ask them to coffee or a lunch date.  Make them feel not so alone.  It's the first step in overcoming the isolation and despair that can sink in on the really difficult days.  We can all be okay.

I recently had the opportunity to guest blog for The Caregiving Space, titled Four Lessons I Learned After Facing My Worst Fear.  If you'd like to read the post it can be found here    

"The best exercise for the human heart is reaching down to lift someone else up.” Tim Russert


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

Sunday, August 10, 2014

The Wheelchair Pit Crew

Bookmark and Share
Since making the decision to travel with Noah's Convaid Rodeo to Northern Ireland he's grown rather attached to that particular wheelchair. Maybe it brings back great memories for him.  Or perhaps it signals to him the greatest adventure of his life and ours.  Deep down I think Noah is itching for another amazing trip.  However, the Convaid hasn't been the best positioning wise for Noah as his strong tone makes his entire body want to shift to the left.  Which isn't entirely safe as it causes his legs to hang significantly over the edge and in the line of fire of anyone to knock into him.  Noah isn't a big fan of leg and ankle tie downs - especially now that he drives his power wheelchair using the calves of his legs.  He most certainly wants leg freedom.  Can't blame him.  I'd be a bit agitated too if you restricted my movements. 

We knew that we needed to do something fast to correct the problem, so out of pocket costs it was for us.  And these parts cost us hundreds of dollars.  But in the land of special needs, you have to do what you need to in the moment.  Waiting on a response from Medicaid to either approve or deny the request  would have taken 3-4 months, then another 2-3 to order the parts, and another month to wait for the DME to schedule and install.   Noah's safety matters now - not six months from now.   I don't think people have any concept of the amount of wait time that delays children like Noah from accessing their needs for daily living, costing them often times to lose very precious time where progress, development and skill building could have taken place. 

Noah's additional parts arrived in 1 week and today we'd thought we'd install them in the hallway... in eyesight line of Noah.  Mistake number one.  Noah was less than thrilled to watch his ride be altered.  Less than thrilled that we were taking so long.  Less than thrilled that we installed the new vest too low because the memory foam seat sat him up higher.  Chris and I were working on it together.  Really rather simple things to install but we were working so fast as if we were Noah's Pit Crew trying to get him back on the track and out the door for a walk in record speed.   We even abandoned the idea of installing the laterals or the head winged headrest.  Noah was ready to go and was letting us know that we needed to pick up the pace.

On a first glance I think we did a good job in the 10 minutes we had to alter the chair.   The vest seems to makes his trunk more stable, and the memory foam looks more comfortable for sitting.  I can tell one leg still thinks it wants to try to go left, but it has no option but to self correct now that his pelvis is more stable.  Part of it still could be from his desire to drive.  Overall I think those 10 minutes were a huge success.  I think that's the fastest time I've ever adapted anything for Noah.  Expert skills if I don't say so myself.

We also had a drive and walk-a-thon in our garage today.  Every so often we dig out the gait trainers, both a Rifton and a Kidwalk to see if Noah has any more desire to use them than he did the time before, and since we haven't really found a great place for Noah to drive, we do our best to allow him to drive around in the garage.  He of course gets most frustrated when we turn him around to go another direction so he doesn't just roll down the driveway.  I know he wants to be free.   I know he craves to move independently in any direction without influence from us.  
Noah in his Rifton
Noah in his Kidwalk
Noah Power Driving
And while Noah had a fabulous time in his power wheelchair the verdict on his gait trainers pretty much remains the same.  He thinks they suck.   Not a super big deal.  We still have the Upsee which he adores and allows him a walking experience.   Noah's interests remain really in finding ways he can move about in his own way.  And right now he seems to be very focused on trying to figure out how to add crawling the same time he rolls about.   Every time I think about that fact my heart and stomach sink a bit.  I still am feeling the tremendous sting from that Medicaid denial.  I cannot seem to get over that feeling of parental failure to help Noah.

I have to just keep hoping and trusting that when one door closes that another will open.  I just hope the other door doesn't take too long to reveal itself. 


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

Sunday, August 3, 2014

Meltdowns and Trolls

Bookmark and Share
Days when you just can't win for trying.  We all have them.  You know those days when for whatever reason the odds are not in your favor and everything seems to be a big ugly challenge.  Noah has been having them. I've been having them.   I can't really tell the root of Noah's problems.  I think it's maybe a mixture of not feeling particularly his best, a hint of crankiness from sleep complications, and a tad bit of frustration that he cannot verbally communicate and I sometimes fail to get his wants satisfied because I guess wrong.  

For the first time in maybe years, Noah had a big messy meltdown at the zoo.  His favorite places of all favorite places.  How is that even possible? Chris and I looked at ourselves in disbelief.  Hadn't we permanently put these types of Noah challenges behind us?  We were both slightly terrified that we forgot what the angry pissed off Noah was all about.  We hadn't seen that side of him in a long time.  It kind of took us by surprise.  Luke wanted to walk.  No correction, run without holding my hand.  Noah wanted out of his wheelchair to be toted over his dad's shoulder ... and the wheelchair didn't want to walk itself.  These are the moments where I'm sure we look absolutely hysterical to other people in public.  Laugh on people it's quite the trip.   Just be glad you're not on it.  

We assumed this meant Noah wanted to leave the zoo, but it could have also met that he was thirsty, or that he was mad Luke dropped his ice cream, or that the train was shut down for repair, or that we went left instead of right or that we ate when we first arrived which wasn't normal routine, or that Luke was walking when he cannot.   We couldn't trouble shoot, so we opted just to leave, which meant we guessed wrong because as soon as we hit the car heavier tears and protest started signaling he didn't want to be at the car and didn't want to go home - but yet we knew he was so angry even turning around again would only offer us a 50/50 chance of a happy Noah resolution.  

One of those damned if you do, damned if you don't moments. 
It's okay Noah, I have those types of moments lots.

Thankfully, upon arrival at home, a banana Pediasure his favorite, and Mr. Tumble all seems well in the world of Noah again.

And even in these types of challenging situations, Noah still teaches me valuable life lessons.  I  had one of those today is not your days last week with an encounter from an internet troll. Haven't heard of the term before?  Well an internet troll is defined as people who are frequently anonymous (but not always) that post comments aimed to upset others through inflammatory remarks.  These are individuals that usually possess the traits machiavellianism (willingness to manipulate and deceive others), narcissism (egotism and self-obsession), psychopathy (the lack of remorse and empathy), and sadism (pleasure in the suffering of others). 
Don't FEED a Internet Troll
What makes me so deserving of this negative feedback flung my way?  How does one become a troll target?  It's all because I simply have a blog and discuss our pains and joys publicly, openly and honestly.  You're like wait let's hit the breaks here.   Sometimes you want to simply say screw it all.  Just screw all of it.  Put duct tape over your mouth and tie your fingers together so you don't have the ability to type another word.  Silence, you tell yourself must be golden.  And then consider having a big meltdown Noah style. 

But then you collect your thoughts and realize all that stuff is outside garbage.  Literally.  I think some people need this hobby of cyber stalking other people only to be wicked, cruel and confrontational.  In the end it must make them feel so much more powerful than they must feel in real life.  And when you speak about your life in any public way it often opens the door for the very bad people to walk through and very wonderful people to walk through.  A mixed bag of peanuts.  Lots of people simply cannot resist the urge to criticize, challenge and belittle others even if they are an outsider looking in with very minimal details about a much larger picture.   I do often wish the internet trolls would just stay under their bridges and leave others alone, but that's only wishful thinking.   And some special needs parents themselves are trolls... sad but true.  They're not all good apples.

The lesson learned is:  don't sweat the small stuff, and in the end that's about small as you can get in my day.   And there is so much sweet power in the "delete" button, on your computer, in your head, and in your heart.  Who cares?  I'm a special needs parent.  I have a job to do, which doesn't include stewing on crap and comments that have no meaning.  I'm too busy trying to interpret Noah's needs, decipher his meltdowns (which admittedly today I sucked at), and make him a happy and healthy little soul with his own very special signature in this world.  I don't have much time for all the outside unnecessary noise.  I'm marching forward, quite proud of the job God has laid before me... parenting two incredibly wonderful little boys, and one that comes with a lot of extra special challenges.

So trolls park your comments at the door - I refuse to feed you! 


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