Tuesday, April 21, 2015

Power of the Peach

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Noah received an invitation to attend Denver's Choose Kind Super Hero Peach Party which we attended last Saturday.  Last year Noah received a very special pair of hand painted shoes from the non-profit organization Peach's Neet Feet.   The founder, Madison Stiner-Atkins (aka Peach), is expanding her beautiful efforts into hosting Peach Parties, a multi-state traveling tour, to bring those in the special needs community together.  A celebration of love and kindness wrapped up in one room. 
The entire family unit is invited, siblings get to engage with other siblings who have the same understanding of what it is like to grow up with a special needs brother or sister.   Parents who have an unspoken appreciation and awareness of the journey we are all traveling gathered together to enjoy each other's company and celebrate the beauty of all our children.  And at the heart of it, Madison - a very special woman bringing us all together.  We don't get a lot of invites having the special needs family dynamic that we do.  So we were rather eager to go. 

I always have a strong desire to meet those that make an impact on Noah's life.  A village is an understatement.  I've never forgotten not one person that has entered our lives and made a difference.  Without them I would be lost, and Noah without the love he needs to grow from an often cold and cruel world.  We thrive and grow on kindness that comes our way.   So it's an extra special event when you get a chance to meet some of the very people along the way that have lifted you and your child up.  Those that made us smile, those that reminded us to keep advocating and fighting for what matters, to pursue and never give up on our dreams and believing in Miracles.  And most importantly to remember that we are loved and accepted just the way we are. 
As soon as we entered the room to the party, we were greeted by Madison's mother.   She knew us and Noah by name.   Something I didn't expect.  Something that made me feel like we were so welcomed and wanted.  And it wasn't just Noah's name she knew.  Madison's mother knew each and every child that came through those doors.  We were not just a pair of painted shoes her daughter had given away, it was as if we were family.

Madison was just as lovely as I had imagined her to be.   There isn't an ounce of apprehension about holding or hugging a child with special needs.  She loves them.  Genuinely loves them.  Such a wise and old soul for her tender age you sense an incredible wisdom about her.  Although not yet a mother herself she has adopted all of these children into her heart.  They flock to her as a light that shines bright.  It was fascinating to witness and tremendously inspiring.

Noah and Madison having a serious conversation
The boys were given two special capes that had the words Born to be Awesome on the back.  Noah carried his over his wheelchair, Luke strapping his on immediately to become an instant sibling superhero.  Lots of smiles and excitement followed.

There were endless tables with different activities for children to engage in.  Decorate your own cookie table, balloons, bracelet tables, painting shoes table, paint collages positioned on the floor for easy access for children with limited mobility, sticker tables, painting plastic stained glass art, coloring your own pillowcases... and a very special guest appearance from Cinderella and Batman!
The children were able to decorate their own goodie bags, and gather little toys and trinkets to take home with them.  Something the boys are loving days later. 
Mommy & Luke coloring a pillowcase together
The Peach's Neet Feet Goodie Bag
Ironically I think both Noah and Luke were enchanted with Cinderella.  They sat intently and hung on every word she sang.  How can one not love a princess?  Especially one that stamps your hand with a glitter wand and tells you to pose like a princess for pictures.  She was quite the sweet guest.  I admit I kind of wanted to take her home so she could help me keep the boys happy all weekend long.   I now see why Cinderella is so popular in her Kingdom. 

Batman was cool too.  His superhero poses were fun and entertaining.  And the boys love anyone who will read to them for circle time.  The experience made me want to expand upon my children's very limited experiences.  To make their dreams grow big and strong.  I'm sure someday they'd very much love a place like Disneyland with lots of characters to engage with.  It's tremendously beneficial for Noah who can't walk or run, he requires a lot of visual stimulation which was a perfect element to the Peach Party.  Madison put so much effort into making the best party she could.  She made it a beautiful day for so many families.  Building memories and making new friendships.

If you'd like to learn more about Peach's Neet Feet you can visit their website here.   If a Peach Party comes to your town, I highly recommend the event.  You will have the very best time.

A little spark of kindness can put a colossal burst of sunshine in someone's day.

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

Thursday, April 16, 2015

Designed for Failure

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When I tell you that each day I am faced with an incredible challenge when it comes to helping Noah, I'm not exaggerating.  I'm not fluffing the truth.   I balance between fifty to seventy emails on a daily basis all dealing with Noah.   I have had seven phone calls today, between county services, nutritionists, following up on doctor's prescriptions and returning calls that I pray lead me to avenue of help for him.  I am exhausted.  I am worn, I am tired.  And I can't stop.  I don't get the opportunity to say screw it all, I'm done and close the door, because then where does that leave Noah? 

I can tell you where it would leave him. 

It would leave him without therapy
It would leave him laying on the floor all day long because the world thinks he doesn't need a feeding chair, or a wheelchair, or even the right to get better with walkers, crawlers, or standers
It would leave him without the creature comforts we all take for granted
It would leave him without resources to participate in life
It would leave him with access to his own home that he lives in
It would leave him without a way to leave the walls of his own home

I have this stupid fallacy in the back of my mind that someone is going to come to my rescue.  But no one ever comes.  So I sit here with my tears, crying as I type a blog, which means nothing to anyone but me.   My pain as I carry it alone.   No one can feel it, so they read it and move on.  And I know I'm simply a statistic, one more mom, one more family lost fighting the system for their disabled son.  As my youngest wipes my tears and tells me how sorry he is.   When I should be the one telling both my children how sorry I am that I can't do a better job fighting a broken system, to find us help and financial assistance. 

Today I was notified that the State has denied Noah's stair lift to the basement to allow him access to his handicapped accessible bathroom in that they just funded in the basement.  But it's not because of what you might think.  It's not because the request was too expensive, or that it isn't a medical necessity, or that there is no reason for him to need a stair lift.   This is the good part.  The part that blows my mind because it makes zero sense to me, other than someone is purposely playing games with me.

It has been denied because the State wants me to invite two more contractors into my home to give me two more estimates on how much it would be to build Noah an en suite from his bedroom to create a bathroom yet a second bathroom for him, rather than fund a stair lift for the bathroom that they just funded. To build an en suite would eliminate on bathroom, a laundry room, access to the garage to get Noah into the van, a two storage closets, creating the need to relocate a laundry room to the basement (where the current handicapped bathroom now is) a new entry into the garage and relocating all plumbing and eliminating a closet for Noah's clothes and supplies.  That all sounds like a terribly good idea and cheap too right?   And so logical since they just funded a modified bathroom request less than six months ago.  Another bathroom on the main floor quote could easily cost the state 40-60K, when they only give Noah 37K a year to help him (which he doesn't get to even utilize it all because they deny most of my request so they keep a large majority of that 37K)  Which is why the State said put it in the basement to begin with upon recommendations of multiple contractors and a certified Occupational Therapists report.  And what does a second bathroom upstairs even have to do with the fact that we need a stair lift to get him to the basement where the bathroom they just funded now is?  We're going backwards.  Noah has a bathroom he needs to get to which meets 100 percent of his needs and it's in the basement.  He doesn't need two bathrooms he needs one bathroom and one stair lift to get to that bathroom.  It makes no sense to get two more bids for another bathroom just to meet justification to get a stair lift.  I am asking for a stair lift I am not asking for another bathroom.  Why on earth do I need additional bids for another bathroom?

It's a stall tactic one of many they're going to do so that we get to the end of the year as I've tried to jump through all their hoops to say whoops we'll have to consider this next year, and thank you for just allowing us to pocket all of Noah's funds that we didn't let you use while we made you try to chase the carrots we dangle in front of you.  It's funny to them.  They did it last year, they're doing it again this year. 

And if you think it's going to ever get better?  Likely not.  It's going to get worse.  There is in fact a new Bill being heard today, Bill HB 15-1318 to Consolidate Intellectual And Disability Waivers which people should take notice of because employment services are not included for disabled adults and there is no mention of implementation on how consolidation would work, the number of families it would put back on wait lists and the amount of time to get help to these families. Or even the families that would no longer be eligible for help. Remember Noah started with a 7 YEAR WAIT LIST! And that this bill proposes 1.5 Million ANNUALLY cost to manage which is money that could go to families and individuals in services that are on the wait list. This money will create jobs for the state system or consultants but isn't designed to help the very families that are struggling.  That we no longer have a say in what our child needs or that we have no room to negotiate what is funded versus what is not. This will take away from our children's needs. It's helping the government it's not helping our children. 1.5 Million dollars needs to go towards helping them, not to assist the state in getting financially fat and happy at the expense of our children.

When am I going to be able to wake everyone up from the illusion that children like Noah are well cared for by government services?  What does it take for me to scream it from the rooftops before you hear me?  Before you understand that I'm charging thousands of dollars in debt to get him necessities like a wheelchair, to pay for his out pocket supplies, adaptive equipment and needs.   When I am borrowing money and taking cash advances from anywhere I can find it for his therapies, which lands me in overdraft charges and this vicious cycle that is so close to flushing us down the toilet.  Because I don't know what else to do.   And the help that is supposed to be there - isn't.  It's a joke.  It's pretend.  It's made to make people like you believe that families like ours are okay.   The world harshly criticizes me and says I'm painting myself as a victim, when they have no idea that I'm the biggest fighter you've ever come across.   But I fight, and I fight and I fight some more, but I am only one person.   And I have to fight alone.  I have always been an army of one.   No one will stand with me on the front lines.   I am alone.  I am Noah's mom. 


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

Wednesday, April 15, 2015

All My Swirling Thoughts

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There has been so much on my mind lately, that I find it often difficult to really articulate the seriousness of things behind the scenes.  To find the proper words for things I cannot fix, for all the bothersome and complicated problems that I deal with on a regular basis in fact.  Behind my seemingly blog silence brews a whole bunch of stuff. 

Although I've been slightly mute regarding the challenges we continue to face with obtaining government benefits for Noah, Medicaid denials, financial struggles... it's all there.  It never goes away.  Yet sometimes you feel like you're this broken record that plays the same song over and over again.  I myself growing weary of it, wishing that somehow, there would be a better way.   Although I do win some battles I tend to lose way more than I win. 

For instance Noah was granted two anti-suffocation pillows under his Medicaid Extensive Child Waiver, which were expensive over a $100 each shipped from the UK (the only place that manufacturers them).  That required me obtaining not one but two prescriptions from his doctor as the first one was deemed insufficient.   They were ordered which was great, delivered timely - hooray for small miracles.   I opened them only to find this folded up mesh-like material which confused me.  I read the instructions only to find out that they were two disposable pillowcases - that were required for use as traditional pillowcases that contain cotton or polyester - silks even prevent the anti-suffocation pillow from working properly and makes it's safety features moot.   Something I didn't obviously know prior to the request for ordering the pillows or I would have included the pack of 50 disposable pillowcases that were required for the pillow use in the original request.   And although Noah's CES Waiver had zero problems approving the pillows themselves, are dragging their heals at best (I'm being generous here with feelings),  and another two prescriptions later from a doctor are still telling me that the request is inadequate for approval.  I have since faxed them a copy of the warning that says Noah could suffocate from these pillows if I slap a traditional pillowcase on them from Walmart.  Still weeks later - nothing.   4 months (and counting) for disposable safety pillowcases.  Seriously. 

The verdict on the pillowcases is still out for Noah as I'm trying to make due with the 2 disposable pillowcases that came complimentary with the pillows to get you by.  Although the disposable pillowcases were not intended to get me by for 4 months but rather a week at best each or as they are soiled with drool, spit, or acid reflux (but mind you the government doesn't really care about those kinds of dilemmas in my life).  Noah is a number if even that to them.

And I highly doubt most of the caseload is a priority.  County offices have been closed for remodel since January (yes your tax dollars hard at work to make government offices PRETTY!), as a result all county employees are working for home - for SIX months - until sometime in June.   No temporary office - nope working from home.  You can't even call them - without getting a message that email is all you have because they are out of the office - AT HOME!   But this is all okay you know - it should be okay with me, it should be okay with you, it shouldn't be any big deal right?  *Enter BIG sarcasm*  

And it seems that the county can't take the time to adequately answer my emails and questions.  I'm told respite hour notes are inadequate via an email dated March 9th, and that my listing of duties isn't sufficient for providers, so we follow their example only to be told 30 days later that their example is insufficient to be copied each day as it does not offer a listing of different activities.  When I ask for clarification and additional information a response in an email:  "The example you copied is similar to what I have provided to all others" 
Which insinuates I'm the stupid one for not understanding that they keep changing the rules without proper explanation and when I ask for clarification they refuse.   Here it is 4pm and almost 24 hours after I requested a phone call to discuss their rather curt and unprofessional email, and yep they are probably too busy doing their laundry or gardening at home to get back with me. 

Oh but wait, I can't really vocalize my disdain too much because they hold the key to Noah's recent stair lift request.  And if I don't suck it up and kiss the very butts that are egging my mother bear claws on, they very well could deny the pillowcases or the stair lift or the sensory clothing or anything else Noah needs simply out of spite.   Such a double edged sword. 

Yet there's the truth of it.  The things swirling around in my head.  (Or least parts of it).  There's a lot on my mind these days. 

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

Tuesday, April 7, 2015

EazyHold is Essential

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We have been playing around for the last few weeks with a new product that is getting ready to launch called EazyHold.  It is a hand mobility support strap that goes gently across the back of the hand to help any person of any age that has difficulty holding and grasping objects such as spoons, toothbrushes, painting utensils, pens and pencils, toys, and even popsicles and lollipops.  I am super impressed with this product.  It is essential if you have a child like Noah who cannot hold onto objects independently while using his hands.  We've had a lot of fun in fact using it, and it's giving Noah a new sense of independence.

Noah's therapists have even started using EazyHold with him during therapy sessions, and helping him initiate play feeding himself.  Something he gets to see his little brother do on a frequent basis with his toddler kitchen toys.  Sometimes I tend to forget that Noah has a child's imagination just like any other child.  That he can't pretend that he's building a fort using empty gift wrap holders and old sheets, or pretend he's whipping up a morning breakfast and serving his parents with plastic food with tiny tea cups without help, but that his imagination is still there.  I know he'd be pretending he was riding a horse, or playing make-believe if he only physically could. 
Noah using EazyHold with his ez-pz bowl
Noah pretend play eating
I could see a lot of joy in his face, he was having fun when we were pretending to play-eat during therapy.  I seen his imagination hard at work.  Something we couldn't have really done without EazyHold allowing Noah to hold onto objects to accomplish his pretend play.   Noah has pretty high tone and he has a tendency to whip the best of gadgets off his hands flinging them halfway across the room, but EazyHold doesn't come off until we take it off.  No amount of Noah whipping his hands around or waving them about releases EazyHold.  It allows him to play and grasp utensils and hand-held tools without getting frustrated that he cannot adequately hold onto them.

EazyHold comes in many different sizes and in different diameter width depending upon the utensil or tool used, so I was able to use it on myself to see what the sensation felt like.  It is remarkably comfortable.  It's soft gel material makes it flexible and lightweight.  You don't feel like your hand is weighted down, my hand didn't sweat or feel like it was sticky after using it.  After a while I really didn't even notice it was there.  It felt rather natural.   I am loving it.

Noah's little brother Luke also seems to really love EazyHold, and although he doesn't need it, he loves to use it when Noah does and mimic what Noah is doing.  Which to a large degree is really healthy for Noah.  He gets to see that what he is doing is normal and typical and that EazyHold is a natural gadget to use.  So if you have two children you might just need to order double!
Noah's brother, Luke playing with EazyHold

Benefits include:

• Non-slip properties allow product to stay in place when secured to the handle of an implement.
• Highly stretchable, and able to fit and maintain its grip over a wide variety of implements.
• Comfortable, soft, washable and hygienic, they are dishwasher safe.
• They attach to the implement, not the hand.
• Made of one molded piece of food-grade silicone.
• Can be used on either hand.
• Great for people with limited grip strength, limited hand or finger mobility, or even missing fingers.
• Helps prevent utensils and tools from slipping from grasp during use.
• Versatile, and available in numerous sizes to adapt to a variety of hand sizes, tools and utensils.
• They assist in many activities: sporting and aquatic equipment, musical instruments, household and personal hygiene products, garden and cleaning equipment, eating and cooking utensils, paintbrushes and painting equipment, and therapeutic, medical, and rehabilitation purposes.

I think this product is going to make a huge difference to those in the special needs community.  It's brilliant. 

To register for updates when they go on sale visit: EazyHold
This is a purchase you absolutely won't regret. 


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

Thursday, March 26, 2015

Co Swim School: The Guppie and the Pilot Fish

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Maybe it was just chance.  Maybe it wasn't.  During a quest to seek out touch up paint I found myself at the closest paint store to our home.  Sherwin Williams only 2 stop lights away.    Almost 7pm at night, the lights next to the paint store lit up like a large neon blinking lights - okay they didn't blink but in my mind the sign grabbed so much pull of my attention that I felt compelled to just go in.  Explore it as an option for Luke to do swim lessons I thought.  The small space told me it must be a very small pool to be positioned into a strip mall like that.   But I was very wrong.  Triple the size of Noah's warm water pool, I was simply in awe.  The office attendant was lovely and polite.  I had neither child with me, so it was easier for to feel out questions without scaring them off with a visual of a child in a wheelchair.   It was really busy, and looked very popular with other parents in the community.   I asked first about lessons, pricing and availability for Luke, then figured I had nothing to lose by mentioning Noah.   Their pool was certainly appealing to me, as it's heated between 90-92 degrees and salt water.   And with Noah's contact allergies to the chlorine at his warm water therapy pool I thought it might just be a good option for him.   The young lady took down my information, and said she'd check with the owner and get back to me about including Noah.   I kind of expected it to be a giant no.   Noah's physical challenges are great and had the potential to scare off any chances of swim school. 

But much to my surprise, they agreed to let Noah attend, and no less placing him with a swim instructor experienced with children who had special needs.  Ironically, I'd learn much later that the owners themselves, had their own child with special needs and worked teaching with an emphasis with special needs children.   How lucky could I get? 

Because Noah needed a lot of hands on attention, we had to opt for a private class for him, which really great.  And we enrolled Luke into his first set of classes.  Everyday for the first two weeks, to get his feet wet so to speak.  Luke entered as a Guppie, who will be soon transitioning to a Clownfish, and Noah, well I gave him his own little fishy title of Pilot Fish - fitting because of his love of airplanes and because he's swimming alongside his instructor, Mr. Andrew.

Noah has been doing wonderfully, he's excited and looks forward to it each week.  The swim school even has embraced Noah's physical needs and ordered him some adaptive swim devices, and are working on building a changing table to assist him with his needs.   Mr. Andrew is just fabulous with Noah.  I knew almost instantly that he was a perfect match.  Mr. Andrew has a soft patience about him, natural caregiving presence and is really receptive to Noah's needs.  He's also very complimentary of all the little things Noah can do himself like how he kicks his legs alternating in the water.  And he's got the strength to handle Noah when he gets excited and wants to arch backwards.

Luke is almost at the end of his first two weeks - with one day left to go, before he transitions to once a week.  His first day was rocky and within his first five minutes in the pool found himself chasing after a toy that had drifted and landed at the bottom of the pool trying to chase after it requiring full rescue by a lifeguard.   Certainly made my heart stop, and flashes of every special needs child  I know with disabilities related to near-drowning come to my mind.  They got him up quickly and he didn't cough.  He looked stunned, confused and petrified.   The next day came with tears, and tremendous apprehension.   By the third day he was over his fears but then onto other group complications.   Luke likes to splash.   And by splash I mean a lot.  And often without following the instructor's command to stop.  We're working on it, and coaching him a lot at home.  We are reassured that he isn't the only child that has splashed.  But at the same time it sucks that it's my child doing the splashing at the current moment.   And I kind of feel that if I'm already the elephant in the room with a child in a wheelchair, that my typical child will gain a reputation for being defiant to the rules.   I could just strike out twice - despite my best efforts to try to blend in with all the other parents.  And you always worry people are going to think it's reflective of the job you are doing parenting.   I have no idea what the other parents in Luke's class are thinking, but part of me thinks they are counting down the days until their children don't have to endure my child's splashing.
Luke while the least skilled in his class, tries hard to float.  This is his first exposure to a group of children and the first time he's ever been even near a swimming pool.  He's only played with two other children around his age in his entire life for maybe an hour each time at best.  Socially I think Luke is doing well with others.  But I've noticed his strong desire to put his classmates first.  He points to who he thinks should be next to swim, leaving himself last.  If you didn't know Luke you'd think he was doing this because he was scared, but he's not.  He's grown comfortable with the water despite his rough first day start.  He's doing it because he wants to put the other children's needs before his own.  Just like he does at home as our entire family unit must place our needs on hold to provide and care for Noah.  At least he's being kind and age appropriate to other typical children - even if he has a compulsive splashing desire.  I really loved Luke's instructor, Mr. Kenton, but yesterday was his last day and he is truly talented and naturally great with relating to small children.  Super sad for me as Mr. Kenton was the first stranger Luke ever hugged. While I love to see people pursuing their dreams and seeking career advancement, I am secretly hoping that he comes back. 

So far it's a pretty quiet 1/2 hour for me, one mom so far has made an effort to talk here and there with small talk.   Remarkably it's the staff there that has been exceptional.  All the office managers address me and both my children by name when we arrive and when we leave, never failing to help me with the door and Noah's wheelchair.  Makes me feel like I'm not invisible.   I have a name, Noah has a name, and Luke has a name.  I'm not just that mom with a child in a in wheelchair or even that child that likes to splash.   I know that most people may not understand that - because unless you experience how really minimally you are noticed, acknowledged or given consideration out in public it's a big deal when someone pays you positive and intentional attention. 

If I could just get Luke to quit splashing things would be pretty perfect.  I am thankful I found Co Swim School - in my backyard no less.  Great group of people.

"When life gets you down do you wanna know what you gotta do?  Just keep swimming. Just keep swimming. Just keep swimming, swimming, swimming."  Finding Nemo
So keep swimming it is.


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

Sunday, March 22, 2015

Moving a Grain of Sand

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Ever sit and watch a tiny ant carry a grain of sand?  So small, and often double their size they dream big.  That one small ant's giant efforts at first seem so insignificant.  A lonely ant with a heavy load on it's back it keeps moving forward, even if it drops the grain of sand it picks it right back up.  It never gets discouraged, it never stops, it never quits.   That little ant is making a difference building a community one grain of sand at a time.  It knows that others depend upon it's action to succeed.  So it carries on.  No matter how hard, or how impossible the task at hand seems.  That one little ant with it's grain of sand.

We all can learn so much from that tiny ant's determination. 

A little over three years ago I wrote a guest blog about a new product that had been developed called Caroline's Cart.  A grocery cart designed for those with disabilities to be able to shop with their caregiver without needing to push both a wheelchair and grocery cart at the same time.  http://handicapthis.com/be-the-change/

I encouraged as many people as I could find to advocate for this much needed product in stores, print out the campaign packet, ask managers and owners in person, call to follow up.  Remind them the special needs community deserved an opportunity to shop easier, and in turn gain loyal and grateful customers.  Sounded easy right?  Not so much.  It's easy to turn a deaf ear when special needs grocery carts are not in high demand.  We are often a very small population in comparison to the needs of able-bodied shoppers.  Businesses not often willing to assume the investment - even if that meant that those with special needs couldn't comfortably shop at their establishments.   Many managers willingly listened, seemed interested, acted in fact like they'd really consider it, but in the end would say they didn't have the funding to support not even one grocery cart.  

But Caroline's Cart was met with lots of demand from all over the country.   And slowly the cart was integrated into some stores gaining in popularity.   It was working.  The special needs community was being successful in their requests.   And finally after all the asking I had done, I too was able to score my first Caroline's Cart victory.  

Because Noah is so medically fragile we do our best to feed him healthy and organically to give his brain the best chances of development and recovery.  (Not a financially easy thing to do) but nothing about having a special needs child is financially easy.  I focused my efforts on where I most needed the Caroline's Cart.  Whole Foods. 

Within the first two days of putting in my request, I received a lovely message back from the manager saying that they would be honored to obtain a Caroline's Cart to assist those with special needs like Noah.    All those years of my requests being turned down by so many other businesses and finally the first yes!   Costco said no, Walmart said no... but Whole Foods was a glowing yes!
Checking out onions and potatoes
Noah picking out items he wanted in the basket
And they were so fast about ordering keeping me updated along the way so I knew when to expect it's arrival.  And it arrived right on time, a Tuesday afternoon a picture of it sent to my email notifying me of it's arrival.  Inside the doors, sitting next to an apple display - waiting for Noah.   And so we all went to Whole Foods to shop as a family and for the first time in 6 years Noah was able to shop comfortably in a shopping cart.  

Noah spotting his favorite food pouches on the shelf... his expression was golden
I know you can't imagine what those moments in life are like if you don't have a child like Noah, but it's a lot like the feeling of being able to do things just like everyone else can - for special needs effects the entire family unit.   Noah loved the Caroline's Cart.  I did take the Snuggin Go Too (a supportive product we use in some of Noah's pediatric wheelchairs and strollers for additional trunk and head support) it really helped as the Caroline's Cart is designed for those of all ages.   I must also give Caroline's Cart a glowing review for really easy adjustable straps when you are trying to maneuver a child who cannot sit independently while putting them in the cart.  Very nicely done with the strap adjustments.  I was impressed.  

Noah understood what we were doing - we were shopping with him and placing things in the grocery cart.  Just like we do with his little brother.  He laughed and smiled at others.  He looked at produce at a level like we all would.   He was stimulated, interested and engaged in the world around him.  So much different from being confined to your wheelchair being pushed behind a large bulky cart. 

And I finally felt like the little ant in me had finally accomplished what I was supposed to do with my grain of sand.  I made a difference.  Not just for Noah, but all those like him.   And I'm far from done, because I'm going to just pick up another grain of sand and keep going.  This time I have my sights set on the campaign Space for Change.   The UK has hundreds of adequate changing spaces for those with special needs.  We have none.  It's about time we focused some energy on proper changing accommodations so we are not forced to change our children on urine soaked bathroom floors.   And it might take me three years to move my next grain of sand too, but I'll keep marching forward, with the same determination and grit knowing the dream is in sight.


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

Thursday, March 19, 2015

Painting in Blue

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Last week, I tried to muster up the courage to try something new for both Noah and Luke.  Sometimes our world feels so small and confined.  Like there isn't anything outside our front door.  We merely exist between these walls in the house, only leaving for therapy and to fetch groceries.   And as hard as it is, and let me tell you it's really hard to sometimes get out in public with Noah, and Luke at the same time, I thought maybe we'd try a free painting class hosted by Whole Foods just up across the street.   I knew I'd need an extra set of hands so I begged Chris to take off work - something he hates doing.  He's loyal to his job, and knows we cannot do without money for him taking a day off.   But he agreed knowing it was important to me to try to offer our boys a different experience. 

I knew it would go one of two ways; Noah would either love it.  Or he would hate it.

And then Luke - my wild card.  Not having a multitude of social opportunities with peers his age, I wasn't sure what he'd think of painting with other children.   Noah's grandmother had bought Noah an adaptive glove with a paintbrush for his last birthday.  We took it with us to see if Noah wanted to use it for painting.  We strapped it on, and he started his whine.  His whine that serves as a warning that he'll have a tantrum if you don't heed his warning of displeasure.  We thought maybe he'd work through it, give him a moment and let him paint some blue on his board and he'd get the hang of it and find it fun.  But the with the whine he added in his extensor tone and arched backwards in protest.   He didn't want to paint.   I was sad, but Chris loaded Noah back up in his wheelchair and just toured the store so I could allow Luke an opportunity to keep painting.  Luke was somewhat interested.  He painted his whole board blue but then fizzled in interest when he had to wait for it to dry until the next step.  When he was finally able to move forward with painting a lady bug on his blue background he decided the all the colors needed to be blended together for his interpretation of what a ladybug should look like.   I stared at Luke's cheddar crackers given to him by the store, still bummed that I tried so hard to line something up for Noah to be included and he wanted no part of it.   Luke ignoring any direction from the art director and continuing to swirl about his random design often getting up to walk around slightly and tried to escape so he too could go shopping, I picked up a brush and painted a ladybug on Noah's board for him, even painting his name on it as if he had completed it himself.  

All the kids finished their paintings and lined up for a group picture.  All except Noah who was touring the store in his wheelchair.   I tried.  And failed.   A wasted a day off for Chris for what I hoped would be this memorable and fun activity.  I wound up pacifying Luke with a cookie to coax him to sit behind Noah's wheelchair, and off we went for the comforts of home. 

I go over a million times in my head how to make things like this work.   Noah's unpredictable, which thereby makes it hard for Luke to do something if Noah doesn't want to be there.   My encouraging mother telling me it was just my first public try at something with them together and that I shouldn't give up that they are both just new to engaging with the world.  And then that awful feeling of failure runs through your veins that you are not doing enough to make things work out well for your children.

It was so wonderful that Whole Foods was willing to include us, I spoke to them several times about Noah in advance and they were so welcoming so I was extra disappointed when he wasn't a bit interested in painting.  It makes me feel hesitant about trying to line up something like this again, knowing that it didn't go well.  And that I need extra hands in the event that Noah wants to leave and Luke wants to stay - or if Luke wants to go and Noah wants to stay... and it's not like we can ride out Noah's tantrum in a store... he'd scream so loud you could hear him in the next state.  What is a mom like me to do... except paint it blue?


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