CBeebies in Ireland: Something Special

While reassuring ourselves that they boys had recovered from their morning illness, we toured our television programming options in search of children's shows.  We toured the guide and stumbled on CBeebies.  We turned it to the channel and were immediately surprised by what we seen.  Multiple children in wheelchairs with 5 point harnesses, gardening!  It was Mr. Tumble with star Justin Fletcher and his show, Something Special.   I was in awe.

We have your token child with special needs sprinkled occasionally on US television.  We all get excited when Sesame Street has a service dog or a child in a wheelchair.  And you might see these characters if you are lucky here and there, once a week... maybe once a month even.  It certainly isn't an everyday occurrence when you turn on the television for your children. 

Most of us are familiar with only a handful of differently-abled children's characters.  Here is a list that most of you may recognize:
Blindness

• Aristotle, Sesame Street
• Blind Pew, Muppet Treasure Island
• Skippy, Bear in the Big Blue House

Deafness

• Linda, Sesame Street
• Left Door Knocker (partial), Labyrinth
• Lois (partial), Bear in the Big Blue House
• Pops (partial), The Muppet Show
• World's Oldest Fraggle (partial, carries an ear horn), Fraggle Rock
• Old Fozziewig (partial, carries an ear horn), The Muppet Christmas Carol

Wheelchair users

• Ethyl Phillips, Dinosaurs
• Griotte, 5, Rue Sésame
• Katie, Sesame Park
• Ricardo, Talk, Listen, Connect
• Sivan, Rechov Sumsum
• Tarah, Sesame Street
• Traction Jackson, Sesame Street

Other

• Beggar (uses a crutch), The Muppet Christmas Carol
• Jason (Down syndrome), Sesame Street
• Kami (HIV positive), Takalani Sesame (also appears on Sesame Square and The Adventures of Kami and Big Bird)
• Long John Silver (amputee), Muppet Treasure Island
• Tiny Tim Cratchit (kidney disease or rickets), The Muppet Christmas Carol

Now imagine you turn on the television while you are traveling internationally with your child who has special needs to see this!

You'd be so in shock you'd take pictures just like we did.  Not what you see everyday, not certainly here in the US.   And it doesn't stop there.   We're watching bedtime stories with a narrator in a power wheelchair.   Yes, we took a picture of that too!

Inclusion feels very different in other places of the world.  I never would have known that if I hadn't experienced it for myself.  Not one time did a person stare at my child, not once was there a rude comment from anyone.  People on the street would stop us to speak directly to my child, even knowing he likely couldn't speak back.  I had likely found the closest feeling to normal that I've had in five years since Noah's birth.   Those types of things should be happening everywhere worldwide.   Our children need to be exposed to shows like what CBeebies is offering on a daily basis.   It helps teach acceptance and understanding at such an early age.  Not to mention the world of good it does for children with special needs to see themselves just like everyone else.  Cognitively, Noah understands everything, and he very much loved seeing other children like him on television.

I encourage you to read this article about Mr. Tumble (also known as Justin Fletcher) http://www.mirror.co.uk/tv/tv-news/mr-tumble-star-justin-fletcher-1271878

CBebbies also has a presenter Cerrie Burnell who has made a big impact in UK programming.  Her story equally inspiring and well worth the read:
http://www.bbc.com/news/blogs-ouch-24988596

Thank you CBebbies for making us feel so normal as a family as we cuddled that beautiful Ireland morning in our hotel. 

We are less when we don't include everyone.
Love,





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

Ireland Accommodations: Who Says There Is No Place Like Home?

The Park Inn Radisson in Belfast was quick to great us with a friendly hello.  We were given two sets of keys; for joining 2 rooms together, numbers 214 and 216.  They lovingly assisted us with our cumbersome luggage to our rooms.  The rooms were nicely decorated, warm and inviting.  When we reached the adjoining room, room number 216 we were simply in awe.   Our hosts arranged and rented a hospital bed for Noah for the hotel room we were staying in.  And not only did they rent this amazing bed for him, but the perfect air mattress that constantly had a flow of air to go with it to make sure he didn't receive any pressure sores from sleep.   The room also came with the biggest handicapped accessible bathroom I have likely ever seen.  It even had a emergency rope which we quickly realized Luke liked to pull.  When it's pulled it gets the front desk's attention immediately!

The hospital bed for Noah in the hotel

Noah's handicapped accessible bathroom in the hotel

And a blender to blend Noah's foods waited for us in the lobby of the hotel to pick up so that we could puree all of Noah's meals while in Ireland.  I love that little Tesco blender so much!  Fabulous product!  We set up Noah's room first lining his bed with pillows so his arms and legs didn't get stuck in the side rail bars.  Hotel housekeeping was so pleasant and helpful in offering us extra supplies and bedding to make up Noah's bed.  His dad had a twin bed and slept in the same room as Noah, while Luke and I slept in the same bed in the other room. 

The blender we used to make Noah's food

We settled in for the evening arriving late afternoon Belfast time.  We were so hungry and exhausted from the plane trip that we ordered room service, and went to bed by 6pm Belfast time.  Each bedroom had it's own temperature controls.  The room Noah and Chris were in was chilly and we had the hardest time converting Celsius to Fahrenheit - we were guessing and went from being really chilly to baked in an oven!  For the most part the boys slept well through the first night, however come early morning hours I thought I heard Luke with a case of the hiccups but upon closer listen he was actually heaving and getting ready to throw up.  I yanked him out of bed, carried him to the bathroom and laid him on a towel where he proceeded to throw up everywhere.  So not good I thought to myself.  Child number one is sick!  

Our first room service meal in Ireland

Chris gets up to see what is happening and no sooner than does he join us we hear Noah starting to get sick and throw up.  We too get him to the bathroom where he throws up on a towel all over the floor as well.  Child number two is sick!  Chris and I both look at each other, like this can't be happening.  We just got here!  How are we ever going to do anything with two sick children.  In my panic I contact our host, who is lovely and assures us he'll assist and find us a chemist if need be to help.   We cleaned up the boys and watched them for a while, determining that Noah's room was much to hot and we likely overheated him not knowing what Celsius temperatures were, which likely was the cause of his vomiting.  Luke we really aren't sure other than maybe jet lag or over exhaustion, but by mid-morning both boys were doing really well and had eaten breakfast and drink without any problems.  And were full of giggles and smiles.

Relieved that we had gotten both boys to feeling better we decided to watch a little television.  In order to give them just a little relax time we turned it to the children's channel called Cbeebies and we were delighted at the very first thing we seen...

Love,




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

Traveling to Belfast: The Purple People

First I just have to say thank goodness for kind people willing to lend you a helping hand while you are traveling with a child with special needs.  It would not have been possible without the cabin crew, flight attendants and even the pilots of our flights assisting us into our seats, offering to hold a child, strap in a car seat, put extra things in cabin storage and make us as comfortable as they could.  We flew British Airways the round trip and have nothing but positive things to say.  They made sure that all four of us were back to back seated or across the isle from each other so both parents could tend to Noah's needs on the long flight.  We both were worried about how Noah would do on a plane.  With his sensory issues we knew it was going to go really well, or really bad.  We just didn't know what to expect.  Surprisingly, Noah found take off exhilarating and turbulence a big party in the sky.  Wish I could say I shared his sentiments and didn't quite enjoy the feeling of dropping hundreds of feet periodically.  Luke did equally as well and simply sat very patiently and quietly in his seat often dozing through the night.   Noah however stayed up literally the entire night without so much as a blink! 

Our first layover was at Heathrow Airport in London. There was always an attendant who escorted us and our belongings during all transfers helping be our guide through the airport which was extremely necessary when we landed.  I have never experienced any airport like that ever!

Chris and I joked that Heathrow felt like being in a video game attempting to complete several different levels to get to the next stage of the game.  Bus here, bus there, and yet another bus...two customs checks, two checks of baggage, two scans of the wheelchair, two sets of pictures, and then a twenty minute walk to the next gate.  To say we were lost in Heathrow would be an understatement.  The really great thing is that all airport staff wear a really pretty royal purple and all you have to do is look for the Purple People (their real title is Heathrow Passenger Ambassadors) and you know they'll know how to help.  I also really loved how handicapped accessible things were upon arrival in London.  My first impression was that it was very much more handicapped friendly there than in the US.   They really in all honesty kind of pull out the red carpet for you.  The helped us by getting through shorter lines, fast tracking, and doing their best to make it as easy on us as possible. 

We scrambled to get to our next departure from Heathrow as had to be bussed off the plane arriving in from Denver, since the plane was unable to pull into a gate terminal, and they accidentally sent our handicapped bus away thinking we were already on it, when we were still trying to get off the plane.  Everyone was quite apologetic, but in the end the wait was just merely a handful of minutes and nothing that terribly inconvenient, and they let us sit in Club World while we waited for our bus, which is rather luxurious.  Can't say I minded too much!

When we finally got to our next terminal to depart from London to Belfast, there was a delay as the "Jetty" was not working.  I thought that was English terminology for the actual airplane not working which made me nervous when they said engineers were working on it before we flew!  Turns out it's the gadget that connects the walkway to the plane, so when I figured that out I felt a lot better, but the wait was over an hour.  The kids continued to do well even waiting and Noah has very little patience for waiting.   We gave him a drink and fed him while we waited.   And the pilot was so sweet and kind when it was time to board to Belfast.  He even installed our car seats for us so we could simply carry Noah aboard.  British Airways truly gets 5 stars. 

For some reason they had us listed as vegetarians for our flights so we experienced veggie meals on departure flights, which were fine and decent for airplane food.  Noah did have a mini breakdown due to exhaustion for being up for more than 24 hours without a nap and collapsed into a heap of cuddles my arms moment before take off from London to Belfast.  I told the crew I couldn't put him down and they simply put a special buckle around him and me and allowed us to take off that way.  Bless them!

The flight to Belfast to London seemed like a flash compared to the flight from Denver to London.   And once again an escort waited to help us gather our luggage and make arrangements to help us find our taxi ride to the hotel.   The taxi driver was so nice, and wanted to help in anyway he could.  On the drive to the hotel he made sure we were comfortable and told us all the sights of the city as he drove.   I tried to tip him after we reached our destination, but he declined and said "kindness is free here."  I wanted to cry.  As kindness in the US... well we tip for almost everything.  In fact the Super Shuttle that we took to the airport had the sign "Gratuity is not included in price" plastered several places within the vehicle.  It's expected in the US, for just about any kind of service.  

But he meant it, he wanted to help because he cared, not because there was something he expected in return.  My first impression of Ireland was one of love and kindness.  We walked through the doors of the Park Inn Radisson welcoming our adventures with open arms.  We had made it!

Love,



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

Belfast Blessings: Invitation to Ireland

One morning in January, I was laying in bed, listening to Noah breathe on the baby monitor after a long night of many sleep disturbances for Noah without cause or reason.  He was sleeping in, as was Luke who also can't sleep through Noah's noises and needs.  I turned on the television waiting for both children to awaken for the final time that morning and happened to watch whatever channel it first came to.  A movie titled P.S. I Love You was on.  I had seen it prior to Noah being born, but vaguely remembered it.  The premise of the movie is about a grieving widow that loses beloved husband to a brain tumor and learns that he left a series of letters behind to help her cope with the pain of living without him. 

https://www.youtube.com/watch?v=vyHNmC1dq2c

These letters send her on a trip back to Ireland, her husband's native country.  And that's about the part of the movie I caught that January morning.  I remember thinking to myself, wow, it's so green, beautiful and soothing (even knowing it likely was fictional and maybe not even necessarily filmed there); it was the fantasy of how pretty it was - and something within my soul craved to be there.  I dismissed my feelings as just stemming from my mother's Irish heritage and maybe a slight fancy for the Irish dialect.  My mind wandered for a moment and then I wanted to slap myself silly... what are you thinking I thought?  You will never ever travel again now that you have a child with special needs, let alone to another country.   We had never been more than 40 miles in any direction from home since Noah's birth. 

Two weeks later fate, destiny, divine intervention,  power of intention... or whatever you'd call it happened.  An unexpected invitation was extended to take Noah to Ireland to participate in the launch of the Upsee, a piece of special needs equipment by Firefly a division of Leckey. It's one of those pinch me moments (I'm not wearing green)... is that really happening kind of thing.  But the invite was very real.   For the first time in our lives Chris and I really had to consider if a trip with a child like Noah was even realistic.   It didn't take us long to really come to the conclusion that this would be a once in a lifetime opportunity for Noah and for us as a family.  And a chance to bring so much information to families with children with special needs.

One night Chris asked very seriously in fact, "Do Leprechauns come from Ireland."  I laughed and said, "well technically yes, but don't expect to find a pot of gold."  But if by chance I did find a wee Leprechaun and he granted me part of his gold, I'd help every child with special needs that I could find.

We scrambled to have passports expedited, figure out what we'd have to pack to take a child on an international trip; obtained doctor's letters, contacted TSA Cares, and made a checklist of all the things that were necessary in Noah's daily life.   At first it was a bit overwhelming, but it was really because we were charting unknown territories.  We were not experienced travelers - especially when it came to attempting to travel with a severely disabled child.  I questioned over and over again am I making the right decision?  Should we just never leave the boundaries of our home?  And then I received an unexpected message from a friend that had no idea we were getting ready to embark on a very long and special journey to Ireland.  It read:  "A comfort zone is a beautiful place, but nothing ever grows there."  It spoke to my soul and gave me the confirmation and reassurance that I was seeking.  We were meant to go.  We needed to grow.  

Two days later we boarded a plane from Denver to London, with a brief layover in London to Belfast, both directions.  Two carseats on rollers, two carry-on backpacks, two children, a wheelchair and junior rider seat to attach to the wheelchair, with three big bags of checked in luggage.  There we were blazing a trail through an airport on our very first journey from home.  Full of bravery and courage we walked down the gates to board the plane.

Love,




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

The Upsee by Firefly

In early January Noah had the opportunity to trial a new piece of adaptive walking equipment called the Upsee by Firefly a division of Leckey.  It arrived in a little box with a pretty Firefly Logo and arrived less than 48 hours after shipping.  It felt much like getting a gift at Christmas, all wrapped up nicely.  I was reserved about whether it would deliver any results for Noah, as often times as special needs parents we get our hopes up that a product will deliver results only to find it didn't do what we had wished for. 

I opened the box to find two foot plates, a parent's waist belt, and a blue child's harness for Noah and a set of instructions.  My first impression was this is much too simple for Noah, and there is no way that he'll be able to use this with his limited head, neck and trunk control and I imagined he'd rather slip right out of it. I thought well it's a neat idea, but there is no way a child who cannot sit, walk, talk, crawl or self-feed can use this.  I waited until Noah's daddy came home before using it for the first time.  We laid Noah on the floor and put him in the harness.  The harness has a great design with snaps on both shoulders.  Plus number one, I wasn't trying to cram Noah's stiff arms through arm holes.  And then clips that go over the shoulder straps to keep the child extra secure.  We then strapped in Noah's legs which have straps that go from the groin to the hips.  It took about less than five minutes to have him in the harness.  I attached the waist belt which I thought immediately this is going to give me some back pain as it isn't that supportive, but thought well no pain, no gain for Noah.  I then placed my feet into the footplates, and sat down on the couch and held Noah up against me to attach his shoulders to the waist belt, then his hip clasps to the waist belt then made his feet join mine in the foot plates.

Then we carefully stood up together for the very first time.   Noah started to giggle and squeal with excitement.  We took our first step in unison.  And surprisingly no back pain or strain for Noah.   His head lifted instantly to see what direction he was traveling, I would stop and his head would take a break and drop, I would walk again and he'd lift his head each time.  I started to feel tears pooling in my eyes and before I knew it they were gently falling upon Noah's head.  We were walking for the very first time.  My child was walking and we were doing this magical thing together.   And just when I thought that I couldn't get any more emotional over what I was experiencing, his little brother Luke walked up first gently taking Noah's hand in his out of curiosity and then walking up and wrapping his arms around his big brother.   My heart was flooded with immense joy, endless tears streamed down my face and we all embraced each other.  For the first time my children were hugging each other, Noah doing his best to wrap his right arm around Luke to hug back.   The experience was nothing like I have ever felt.  It was like having a dream come true, one you never thought would be possible.

I continued to walk on with Noah, I could feel him pushing through his legs and bearing weight, something I never knew if he could do in a traditional gait trainer or walker or even stander.  We could assume that he was bearing weight at times but had no way of truly knowing, but I could feel it through my body, his movements.  I knew exactly what he was doing, and at times it felt as if he was trying to take the lead in making steps.  We walked over to the refrigerator and I opened it for Noah, he stood there in awe of what it contained for the first time he was able to see the world as we do, upright.

Our walking expanded to the backyard where we kicked a ball around a few times together and then for small walks outside the front of our home.  I am sure our neighbors must be very curious, but I am sure we looked more like a family participating together than we ever did before just wheeling around Noah's wheelchair.   We are especially excited to try it at the zoo this year so Noah can walk around and participate with other children just as they do.  It gives our family endless ways of participating together.

The Upsee will retail for $489 USA dollars including shipping and handling.  And will be available for purchase worldwide April 7th!  The other really great option is that Firefly is offering a 14 day return policy, risk free!  I would encourage any family who has a child with special needs who is unable to walk to obtain this piece of equipment.  

Noah at The Ark Petting Zoo in Belfast, Ireland

Walking as a family at The Ark Petting Zoo in Belfast, Ireland

I will also be on the guest panel at the Webinar that Firefly is hosting on the product, April 1st, 2nd and 3rd to answer more questions and provide additional information on the product.  Registration can be found at this link: http://www.fireflyfriends.com/webinar

You can read some press releases on the Upsee, including my interview with abc news at:
http://gma.yahoo.com/blogs/abc-blogs/mom-invents-harness-help-disabled-kids-walk-163812973--abc-news-health.html

http://www.msnbc.com/craig-melvin/watch/helping-kids-with-special-disability-needs-218423363578

http://www.huffingtonpost.com/2014/03/25/upsee-kids-walk_n_5027905.html

http://www.dailymail.co.uk/femail/article-2588157/Harness-hope-Invention-mother-wheelchair-bound-son-helps-physically-impaired-children-walk-time.html

http://www.today.com/moms/moms-harness-invention-gives-kids-chance-walk-2D79441383


A Journey Of A Thousand Miles Must Begin With The First Step 

Love,




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

Sharing Beautiful

Noah was photographed for a very special project called Sharing Beautiful.  It is a labor of love by a photographer named Steve Stanton who has developed this project to celebrate children and share a child's view through photography.   The approach is very simplistic, classic and timeless.  With children in white shirts and jeans, your eye focuses on on the child, who they are as individuals and their stories.  I always love to see how others capture Noah's spirit.  The little boy - not the disability.   In most pictures, as I'm sure you've noticed Noah looks a lot like a typical five year old little boy.  If you seen him in pictures you may not know that he is unable to sit, talk, walk, crawl or even self-feed.  He speaks through his eyes, his tender smiles and infectious laughter.  He can speak sentences in just one photograph.  

We anticipated when we did Noah's Lay Me Down To Sleep photos that they would be our goodbye pictures.  But, they turned out to be our hello and since then it's been so important to me to have a history of Noah's life documented in photographs.  Photographers, each unique but as equally as special in telling Noah's journey.  A journey without words.  Photographs have a very special way of making you feel and understand something you may not otherwise be able to describe using words. 

That is why I am in love with the idea of Sharing Beautiful.  A series of different children telling their stories in photographs.  This project will be published in a book, which I can't wait to share with all of you, and will be displayed in a gallery starting April 5th at Two Rivers Craft Coffee Company. http://www.tworiverscoffee.com/

You can read more about Steve Stanton and his beautiful project at: http://stevestantonphotography.com/ with a provided link to Instagram to view all these amazing children that are a part of this project.  They will move you beyond words.

The laughter of my sweet little boy; there is nothing more heavenly than holding his joy in my arms

"Beauty can be seen in all things, seeing and composing the beauty is what separates the snap shot from the photograph."  Matt Hardy

Love,



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

This is How We Roll

We stumbled on this really cute gadget called the the Englacha 2-in 1 Junior Rider that attaches to the back of strollers.  Another mom recommended it to us after the hopes to import something similar from the UK became the impossible financial mission.  It is a little seat when the child is smaller to attach to the back of a stroller and a standing board for when a child outgrows the child seat.  It works well with all of Noah's mobility seating options. Video of the product can be found here:
https://www.youtube.com/watch?v=nK5xGkD9YJo

Junior Rider on Zippie Wheelchair

It was an instant hit with the boys.  They loved it.  I'm not sure who liked it more, Noah or Luke.  Could be an equal tie.  I think they both realized they were riding together!  A team of two brothers!  It certainly is very nice to have both boys riding together - something they haven't done in over a year since Luke outgrew the side-by-side double stroller.   I was actually dreading summer outings this year, thinking I'd be toting both a wheelchair and a wagon to accommodate both boys.  But I think we may have just found the perfect summer option!

Walking around the Block w/Sunshade

We've taken now two walks around the block and are officially ready to cruise in new style!  I do wish however the seat option would extend to a slightly older age.  It's a small seat and at almost age three, Luke likely can only sit in it maybe through the summer and he'll be too big and will be forced to use the standing board option.  But maybe I'll stumble on something like it with a larger seat down the line.  New things are being created all the time and you just never know what little thing is going to make your life loads easier!

For the first time in years, I had a Noah dream.  I used to have them often when he was little.  He'd be walking, crawling all sorts of amazing things in my dreams.  Then they stopped and I thought well it's over.  My soul has finally accepted that Noah may never do any of the things I dreamed about.  But last night a dream - finally.  He was talking.  And talking clearly.   My dream was likely inspired by something that happened a few weeks ago.  We were getting Noah ready for a bath and his brother was sleeping.  He was squawking and squealing and we told him he needed to be quiet or he'd wake up his little brother, and it seemed so clear his response was "I don't care."  Chris and I looked at each other like did we hear that right?  But we both heard the same thing.  He didn't care if he woke up his brother - that was his response!  I don't think we imagined it.  We really both think that is what Noah said.  In my dream Noah was talking in sentences - and boy did he have a lot to say and he was giving all this advice and talking about the world.  He seemed beyond his years with his wisdom and speech in my dream.   It was so nice to dream again.  I had forgotten how comforting that was. 

"Nothing happens unless first we dream."  Carl Sandburg

Love,




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

Four Leaf Clover

Noah's Four Leaf Clover:
One leaf is for faith,
The second for hope,
The third for love,
And the forth for luck.

Happy St. Patrick's Day 2014

Love, 



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

A Victory for Noah!

A few days ago, I received that anticipated letter in the mail... the Order regarding the outcome of Noah's equipment denial appeal.  It was right after we had dinner.  I took a deep breath and said to myself no matter what it said, we'd be okay.  That we'd continue to fight on for Noah no matter what, even if it was bad news.  I was internally coaching and bracing myself that I could be about to read some more bad news.  I couldn't find the letter opener, my fingers messily opened up the envelope.  I skimmed the first page... then the second, the third, then the fourth.  I just wanted to know the end result.  Page number five there it was.   "The State Department's denial of the PAR is REVERSED and the PAR shall be approved." 

I did a victory dance, right there on the kitchen floor.   Let's just say that it beat any touchdown jig you've ever seen from an NFL football player on their best day.   SCORE!

I of course went back and read the Order summary.  My favorite part (next to the part that says I won) about the Order: "The Court cannot help but wonder why the State Department believes the appeal process is more preferable to a more straightforward methods for developing information deemed relevant by its utilization contractor regarding medical necessity in cases like this." I would love to believe in some small way that I'm blazing a trail to make it easier for other parents not to have to appeal to help their children.  And that the State would realize that we wouldn't be asking for funding if it wasn't medically necessary or needed.  We are trying to offer our children the best quality of life we can give them, a chance to thrive, a chance to improve, a chance at joining their peers and participating in the world around them.   

I don't know how long it will take the DME to place the order for the Krabat Crawler, but I'd like to hope it will be sooner than later since Noah has been waiting on this request since last October.   It's time to get this crawling party started! 

This has been a good week for the mail.  I have been receiving Parents Magazine in the mail for a few months.  I have never had a paid subscription - it just shows up every month.  I remember expressing frustration with the receipt of last months issue.  I tour it quickly, realizing that the majority of the magazine doesn't apply to parents like me.  Advertisements, recipes, tips, a celebration of milestones.  It is like looking at a world in a magazine that you'll never be a part of.  Window shopping how your life *should* have been. 

But today the April edition of Parents Magazine arrived.  I wasn't even going to look at it.  Last month I remember telling my mother how awkward it made me feel and her advice was just to throw it away and not bother.  But I opened it and flipped through a few pages and came to page three.  My interest was peaked by a little red headed girl with down syndrome and it said to turn to page 63.  I turned to 63 expecting just to read about just this little girl, but instead, I found an entire 20 pages dedicated to articles on topics pertaining to special needs children and families.  And not one but two families discussed who have children with cerebral palsy.

I flipped back to the front and sure enough the headline reads "Life in a Special-Needs World."  I likely didn't even notice that headline because the children on the cover look typical in every way.  Thank goodness I gave this edition a glance.  These kinds of topics should routinely be in every parenting magazine.  We shouldn't be separated between this is a special needs magazine, and this is a typical parenting magazine.  After all we're all in this parenting gig together.   And many of us live in a mixture of both worlds, our family dynamic involves both a typical child and a child with special needs.  The first time I've opened up a magazine that you'd find on any newsstand that applies to me!   Way to go Parents Magazine, I'm glad I didn't give up on your content!


"Disability inclusion is about society changing to accommodate difference and to combat discrimination related to people with disabilities. It requires that disabling barriers are removed and personal needs relating to impairment are met, thus making possible the full involvement of people with disabilities and enabling them to benefit from services on an equal basis with others."  Buyie Masaku




Love,



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

The Basement Cave Playhouse

Noah's sensory playhouse built by college engineering students was delivered and built shortly before his fifth birthday.  It took several hours and a couple days of completion as it had a lot of electrical and building components.  These students put forth so much effort in the project and I am truly impressed with what they built.  Not only did the plans of this playhouse have well thought out plans for Noah's needs, desires and ability to play; but it also incorporated the needs of his little brother so the two of them could essentially play side by side.  Really the best of both worlds. 

Interior of the playhouse

Playhouse Slide

Exterior of Playhouse with Blues Clues Mailbox

These students couldn't have added anything more perfect for the boys.  A rock climbing wall and slide for Luke, a sensory cave with lights that activate with a switch that Noah hits; black out lights when it's dark that makes it look like the stars are out, wall sconce lights, a little table and chair for both children to use, it even has a mailbox like Noah's favorite show, Blues Clues, that really sings the Blues Clues theme song when you open the mailbox.  Noah loves it.  

And his little brother has a lot of fun himself, exploring in the jungle themed house.  Finding creative ways of incorporating both children into the same activity is often challenging.   And this house does exactly that.  A place where both children can actively play and engage with each other at the same time.  It's pretty big, likely the size of a large shed or bedroom, and has a high ceiling so adults can comfortably accompany Noah without having to duck or squat.  His wheelchair or any medical device would easily fit into the playhouse. 

Noah in his sensory light cave with a curious Luke

The college students didn't win any awards or achievements for building this playhouse, something I was really sad about as I think it was so deserving of recognition for all the hard work, creativity and hours of labor involved.   This is a link to an article discussing the engineering project that was completed for Noah:
http://www.colorado.edu/news/features/student-life-cu-freshman-engineering-projects-display-expo

They built and created something very special; a concept that really needs to be out there for children with different needs so that they can experience inclusion with children with other types of abilities.  It has provided us with a lot of indoor fun while being cooped up during these winter months.  

Play is the brain's favorite way of learning

Love,



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

Supporting Cerebral Palsy Awareness (Noah's Miracle)

March is Cerebral Palsy Awareness month.  Although I was exposed to cerebral palsy at a very young age, having two close childhood friends with the diagnosis, I never imagined that I would grow up and have a child with the same condition.  Yet, in many ways I was truly blessed that God put those special kids in my life all those years ago.  It gave me in many ways a greater understanding of compassion, love and kindness for those who had differences.   I found such beautiful friendships in the both of them.  They taught valuable lessons and a deepened my perspective on acceptance and awareness of those with disabilities, likely the same lessons that Noah himself will teach others. 

Cerebral Palsy Awareness is very important.  I still remember the checker at Toys R Us, who thought that there was a vaccination for CP, the customer at Whole Foods who called Noah a cripple, the checker at Target who turned their light off purposefully so I'd be forced to find a different line just because I had a child with a disability.  I remember it all through the years.  The people who cause unnecessary wounds in the heart of a mother raising a child with special needs. 

Education and exposure is key.  Talking about CP and and educating people about what the condition really includes helps promote acceptance and tolerance of those with a disability.  I welcome dialog and open conversations about Noah and his condition.  I'm never hesitant to talk about him, how CP affects him, how it impacts us as a family, and what it means for his future.  There are a lot of inspirational elements to witnessing the spirit of a child with special needs and I enjoy sharing that part of Noah with others. 

So when you wear green this month, think of little Noah and his diagnosis of Cerebral Palsy.   May he inspire you to talk about this boy you know, one who defied the odds at birth, and works really hard each day.  He, and others like him can change the world one step at a time.

Love,






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