Tuesday, September 30, 2014

World CP Day 2014

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It has been almost six years of Noah's journey with Cerebral Palsy.   Noah now a young boy, is cognitively very aware that he's trapped in a challenged body.  A voice that wants to get out, a body that craves to move and a desire to demonstrate his perseverance.  He now understands the difference of being loved and being shunned by others.  Which makes it more important that ever to spread awareness about Noah's diagnosis and what that means for him and others affected by Cerebral Palsy. 

Battling rejection is hard for any of us.  It can be incredibly damaging on your self-esteem.   We can quickly convince ourselves of lies that are fed to us by the suggestion of others:  I'm not loved," "I'm not accepted," "I'm not worthy," "I'm broken," "I'm ugly."  When this happens it can cause emotional wounds that are sometimes hard to overcome.   Even harder for a child with a disability that is fighting an uphill battle physically to feel as if the world not only has this negative perception about you, but also refuses to accept you just the way you are.   A child that very much understands what you are saying, even though he cannot verbally respond,  A child that notices your stares, but lacks the ability to to reach out and hold your hand to show you he's a precious human being.  A child that cannot run or walk to prove he's worthy of being considered an equal to your own typical child.  That child, that amazing wonderful child is my son, Noah.

“When you're different, sometimes you don't see the millions of people who accept you for what you are. All you notice is the person who doesn't.” Jodi Picoult
I find myself no longer able to protect Noah from his understanding of the cruelty that others can aim in his direction.  All I can do is encourage him not to fall pray to the population who doesn't yet understand his disability and realize that Cerebral Palsy is secondary to the incredible little guy he really is.  

World CP Day grows more important for us as a family each year.  By bringing awareness to what CP is, how it effects a person, and what that means for them and for others around them is critical.  If you can sway just one person to change their perspective of someone they see with CP, how they treat and act around someone with CP, to educate them that CP is not a disease and nothing to be feared.  Then that is one less person who has the power to reject someone like Noah.

Noah deserves to be valued.

Spreading awareness is so very important.  Awareness = Love = Acceptance.

Acceptance doesn't mean you deny that Noah has severe disability, it simply means that you accept him regardless of his disability.   You are able to see that while he's different, he is not less.  Acceptance means you acknowledge that he's worthy of being loved, of having great value in this world.   Acceptance means you don't need to say something nasty or mean and stare, but rather approach him with love and encouragement.   Acceptance means you don't fear what you don't understand or aren't familiar with.

We each have the power to make a difference in the life of another and awareness is key.


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

Monday, September 29, 2014

The iCanCrawler

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The iCanCrawler
Noah was extended an offer to trial a new device, compliments of a therapist in Maryland who gave up her trial opportunity after reading about the Noah's Krabat Pilot denial by Medicaid.  I find sometimes at my lowest moments is when God sends me someone to try to make a difference - to make it better - to help me.    I corresponded with the maker of the device for several weeks as he was putting the finishing touches on his trials.   It was a tremendously generous offer, to be able to try a product for a limited amount of time that may make all the difference in assisting Noah with his desires to crawl.  

The device, named the iCanCrawler,  arrived in the mail Friday and we were so excited to be able to get Noah started over the weekend.   It's a very small portable device, that folds very easy for storage.  The crawler was very simple to understand, although it did come with a detailed instruction manual.   However, once I seen the  yellow harness that Noah would suit up in to attach to the crawler cage frame, I knew that he was going to be unable to fit into it.   I was a little crushed, as I had such high hopes.  Yet, I suited Noah up anyway just to confirm what I already knew.  My mind wanted to find a way to make it fit.  But sadly the crotch strap was a big confirmation that there was simply no way.  Noah was too big and there was nothing at all I could do to make it work.

Noah in the iCanCrawler Harness

I wondered how far off we were, so I got out Noah's Upsee Harness for a comparison.  There was a huge gap in size, I estimated that Noah would have only fit in it until he was around the age of 2.  The manual does suggest it will only fit a child that is 36 months or younger, and weighs no more than 45 lbs, and no less than 12 lbs.   Ideally, I think the product would work well for much younger children.  I think it also would greatly benefit children that may have a delay in meeting developmental milestones, but are expected to eventually meet those milestones and are in need of additional support and assistance. 
The iCanCrawler Harness and the Upsee Harness (Size Medium)

I like that it has a design that allows a child to move in all directions.  I think that it would offer a young child a lot of movement encouragement.  Without being able to really play with it and put Noah in it, I suspect that you'd need to support the child's belly to some degree, at least in the beginning since they are suspended from a single latch on the back of the harness.   I also think that a child would also have to have some already strong head, neck control with at least some basic core strength to be successful in this device.  I see children with limb weakness who need a physical assistance really being able to benefit from this crawler model.

The inventor of the device, Amir Burstein, is a really nice gentleman.  I am so grateful to both him and the therapist who wanted to help Noah.  Mr. Burstein did indicate through correspondence that he hopes to have a model that will accommodate larger children in the future.  Which would be wonderful.  There are so many children like Noah that are trying to reach these developmental milestones at much later ages.  And I always applaud those brilliant minds that are doing their best to make the difference in the lives of children with special needs. 

If you'd like to learn more about this product that is in development you can find more information about it here:

"Sometimes the little things in life mean the most." Ellen Hopkins


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

Monday, September 22, 2014

Proud Germaphobe Parent

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I so dislike this time of year when I seem to have to be wary of those who aren't conscientious of their germs.  And it's not just tiny cute carriers, dressed up in cute back- to-school outfits.  It is their parents who go off to work sick, it's therapists who don't stay home when they have a throat tickle, a sever at a restaurant... it's the cashier at the grocery store.  Adults clearly old enough to know better exposing others without so much as a second thought. 

The truth of the matter is I have a medically fragile child.  Plain and simple.  When Noah gets a cold it is completely different from how his little brother deals with being sick.  Noah can't sit up and clear his chest, he can't blow his own nose, he is in a category of fighting an uphill battle if he gets sick.  His illness can last three times as long as a typical child's can, and has the potential to hospitalize any child with a disability faster than you can say the word germ.  

In the beginning I was worried I was going to offend anyone I came in contact with as I am armed with antibacterial wipes, gels and hand sanitizers pretty much at all times.  I have a no shoe, wash your hands policy note plastered to the front of my door and if you happen to miss that warning, another 8x10 framed notice on my wall that will greet you upon entry.  Noah even has a warning tag on every wheelchair that he owns that specifically states don't touch him unless you have washed your hands.  I don't play games and I don't care if people think I'm flat out nuts. That's fine.  Its a germy world.  Super I get that.  But I am the mom to a child with special needs and my first priority is him, not what others may think about how I go about germ warfare.  I have to keep him healthy and thriving.

So I find it especially appalling when I go to the store, and the cashier blows her nose and then continues to ring up your food.  Turns to you and says "sorry, I have a cold."  Holy Mother of God, NO!!!!! That is so far from okay.  

I wanted to laugh when Noah's nurse brought me a PPE (Personal Protection Equipment) Kit last week.   For those of you scratching your heads, it's a set of gloves, mask and a full length, long-sleeved disposable gown.  Imagine my own personal bio-hazard suit.   Fun.  The idea is for me to wear it if my child ever becomes infectious.  Something the State Department requires be in the homes of any child receiving services.   Lately I'm thinking I need to simply wear that suit out in public.  Gosh.  Really? 

I just couldn't do it, I couldn't bring those groceries home.  I walked away from an hour's worth of effort, loading and re-loading two children and a wheelchair, knowing I'll have to go to a different store and start all over later.   The idea of coming home with someone else's snot on my child's food pouches wasn't in my agenda today.  When I explained that I have a medically fragile child that she was putting at risk, her response was "I am sure colds will build his immunity and I used up all my sick time"  That's just fabulous thinking on her part.  But you can't educate those who aren't even willing to consider they are posing a great risk to another person.  It's such an ego-minded world out there.

Here are simple things that you can do on a daily basis that would make me feel a million times better:

1)  Wash your hands.  And not just every now again, like frequently and with lots of suds.  Pretend you're about to take a Certified Nursing Exam and really get under those nails for a minimum of 15 seconds.  Then pretend you're rinsing like you're headed in for surgery.  Okay, well you get the idea.  Just wash your hands!

2)  Have a cold?  Well first I hope you feel better soon.  Second, blow your nose, cough into your hands, rub your eyes, then go back to #1 and WASH YOUR HANDS after each time you do any of those things!  You will greatly reduce the transmission to others.

3)  Stay away.  I mean that in the nicest of ways.  You are sick and I really don't want to see you.  I can love you from a distance.   And please, I beg of you just stay home so that I can at least get groceries that haven't been fondled with your germy secretions.

4)  Take notice if you have been around another sick person recently.  Are you a nurse or therapist who treated a child with a cold earlier and are now bringing your Ipad, laptop and supplies into my house that the other child played with for an hour?  Decontaminate!  Antibacterial and clean anything that a sick child has touched so you don't pass it to the next house that has a healthy child.

5)  Don't patronize me when I express concerns about trying to keep my child with special needs well.   Just tell me you understand and appreciate all my hard work and efforts.


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

Thursday, September 18, 2014

Helping Hands

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We decided to clean out Noah's closet over the weekend.  It was a task I'd had been putting off for a long while.  Noah's closet isn't like a typical child's.  In it contains pieces of small therapy equipment, his hope chest which I've filled with so many things since his birth, adaptive switches, therapy games, speech devices, splints, orthotics, and miscellaneous handicapped accessories that I'd often like to pretend don't exist.   His clothes always pushed to the front to camouflage what all really rests in that closet.  But nudges from Chris to purge items that Noah has simply outgrown to make way for the new rather forced me into closet exploration.

Most parents have locks of hair and baby books with first memories.   And while I have those things too, my sentimental baby memories come in forms of a first arm brace, a belly band and thumb splints so small they'd fit a three month old.  I can't rid of them, stashed in a box they stay.  They held such promise for me once upon a time.  Well meaning therapists handing these things out like water with the assurance that with a little work and effort they'd fix every problem Noah would ever have.  While I've been able to part with lots of other assistive devices that Noah has outgrown there is something about the first anything that your child used that makes you cling to all those precious baby moments, even if those moments were so very different from what parents usually experience.

Then I came upon a special envelope from another mother.  It was how I stored two tiny Benik hand splints that were sent to Noah.  They belonged to a little boy named Brayden who passed away suddenly in the fall of 2012.  The loss of Brayden was and still is very hard for me to think about.  Knowing a mother's heart aches each and every single second of the day.   When Brayden's mother learned Noah was having difficulties turning his thumbs inward again and getting his hands stuck in a fisted position, she sent me Brayden's hand splints knowing that insurance likely wouldn't help me for many months, if at all.   She gave me the biggest gift.  You might think we'll they are just hand splints, but they are not - obviously if I'm still clinging to Noah's first thumb splints as a baby.  She sent me a piece of helping hands.   She selflessly sent them to me, without hesitation or pause.

Noah used them for about a year, before he outgrew them.  And in that time Noah fully learned to flex his hand open on a regular basis.  Not only did Noah learn that skill but he's learned to turn pages in books with both thumbs.  Something that is often evident with his paper cuts on both thumbs.  And every time I placed those little green braces on Noah's hands, I said a prayer to a little boy that I begged to hear me in heaven.  To look after Noah -  to look after him and bless him with love and help.  I'd like to believe Brayden heard all those pleas for help because Noah's hands have made such tremendous progress. 

Brayden's mom never knew if she'd see them again when she sent them to me, we never really discussed it.  She simply sent them to me because Noah needed help.  But it's time they find another set of hands to heal, and have that mom be able to touch a piece of a memory of her child once again.  There was no question what I was supposed to do when I held them in my hands after they came out of the closet.  It was as if a tiny voice spoke to me, and said, "I'm ready to go home."   I couldn't part with them any other way.  

Brayden's mom is the founder of  The Global Hydranencephaly Foundation. Her hopes are to start a lending library where pieces of therapy devices that assisted our children along the way with be shared with each other.  It is such a beautiful idea that so many children stand to benefit from.  After all sometimes at the end of the day when the system fails us, government services aren't there to help,  insurance declines our child's needs... another special needs parent reaching their hand out in the dark is sometimes the only place you have to turn to. 


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

Monday, September 15, 2014

Digital Shoplifting of Children with Special Needs

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Recently there has been a surge in the digital stealing of photographs of children who have special needs.  We are often finding ourselves being alerted by fellow special needs parents who happen to accidentally stumble on these photo identity thefts and report back to the child's actual parents. 

While some of these digital photograph thefts seem potentially innocent in the world of internet sharing, an increasing majority of these photographs are being stolen for fundraising purposes.  Fake fundraisers set up using our children's pictures.  Some thieves are even going as far as Photoshopping themselves into these pictures to make it look they they are indeed the actual parents of a child who has special needs.  These violations range from online scams to fake pictures on a donation jar.   And no one is safe or exempt.

© [Your Name] [The Year] [Rights Clarification].
© [Your Name] [The Year] [Rights Clarification].any of these photographs are being stolen for fundraising purposes.  Fake fundraisers set up using our children's pictures.  Some thieves are even going as far as photoshopping themselves into these pictures to make it look they they are indeed the actual parents of a child who has special needs.  These violations range from online scams to fake pictures on a donation jar.   And no one is safe or exempt.
We've become a special needs community of families that are eager to share our journey, our child's progress and achievements, all the while discussing the challenges that come along the way.  Pictures and videos help document our journey.  We share these openly and honestly with the best of pure intentions on social media, and blogs without so much as a second thought.  Our days are filled with therapies, and appointments, and caring for children that have a wide range of difficulties, that the last thing on our mind is that someone would want to take advantage of an already complicated situation and steal a photograph of our child and claim them as their own.

An example of a watermaked photo of Noah using PicMarkr

It's a frightening thought for many families but there are some steps you can take to try to minimize the potential of this happening to you.  Here are six tips to consider when posting a picture of your child with special needs:

1. Watermark Your Photographs:
A properly watermarked photograph is a huge deterrent for photo thieves.  There are programs that will help assisting you with attaching a watermark to any picture you decide to post online.  PhotoMarkr is a great free app that can be downloaded, as well as PickMarkr if you are in need of a program that is compatible with a land-line computer or hard drive. Google Picasa or Adobe Photoshop are also among the top rated watermarking solutions.

2. Check For Stolen Images:
Google Images  provides a search engine in which you can search a specific photograph to see if it has become stolen or posted on another site.  The disadvantage being, if you happen to post pictures frequently it very well could be like finding a needle in a haystack as you'd have to ask google to search each and every photo you've ever uploaded to social media or a blog.  Copyscape is also an online tool that will allow you to research stolen content, that can also lead to discovering the theft of a photograph of your child with special needs.

3. Provide A Copyright Warning:
It is imperative that you post a copyright warning if you maintain a public blog.  Creative Commons is an effective tool that puts all readers on notice that is easily attached to any blog site.  You can also make a simple header or footer that puts your readers on notice:

© [Your Name] [The Year] [Rights Clarification].

© [Your Name] [The Year] [Rights Clarification].

© [Your Name] [The Year] [Rights Clarification].blog ask for permission to republish your content, whether that be a "contact us" link, or widget that will redirect you to the author's email. 
Provide options for those wishing to republish your content a way to ask for permission, whether that be a "contact us" link, or widget that will redirect you to the author's email.

If you haven’t already done so, post a copyright notice, provide an easy way for people to get permission to republish your content, and add duplicate-content detection to track down infringement. - See more at: http://info.icopyright.com/about/8-ways-to-improve-your-blog-copyright-strategy-dos-and-donts#sthash.fNT6vpCj.dpuf
4. Check Privacy Settings:
Change your privacy settings on social media to make sure only family members and friends can see videos and photographs.   This will significantly reduce the possibility of close personal photographs becoming stolen property and falling into the hands of strangers.  Most blogs also have the ability to limit access to readers either through a pre-approved email list, or registered user listing.  While that has the potential to significantly limit the readers who can access your blog it would allow you to to a large extent protect sharing your content only with readers that you trust.

5. Use Low Resolution Images:
Using low resolution images can be a great obstacle for a would-be photo thief.  It makes it very hard to digitally alter your photograph and makes it very obvious that it is likely a copy and not an original.   Your pictures are more likely to be overlooked and passed up rather than stolen and posted on a online billboard for all to see.

6. The Buddy System:
Special needs parents are wonderful at networking.  Set up a system in your local group, or internet circle to be on the look-out for each other.  The best eyes and ears can be those who know the true identity and origination of these shoplifted pictures. 

What can you do if you receive notification of a violation and confirmation of your child's picture having been stolen? 

*Send a cease and desist letter to the offender.
*Ask them to remove the picture immediately from their site.
*Report the violation to Facebook, Twitter, and Instagram.
*If you find that your child's picture is being used for fraudulent fundraising you can consult with local law enforcement for assistance.

While the saying goes "Imitation is the sincerest form of flattery," that doesn't hold true when you realize your child's likeness has been stolen and used without consent.


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

Wednesday, September 10, 2014

I Do Not Need Your Two Cents

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Throwing your two cents in when it comes to special needs parenting is less than helpful.  Even more so if it's coming from someone who has zero clue on what life with a child who has special needs is like.   Naturally most parents face a multitude of well-intentioned advice about parenting from let them cry it out to make sure they eat their veggies.

The list is really endless, however any ounce of typical parenting advice is thrown out the window if you have a child with special needs.  There is no parenting book for this, there is no right or wrong way, there is only doing the best you can do.   So when someone comes at us with "advice," more commonly known as parental criticisms,  we just want to spit and scream.

Noah is a very impatient person at times.  What does that look like exactly?  Well visualize that the line to get on the train at the zoo is really long.  But you know he must get on it or he'll have a meltdown, but also visualize that waiting more than two minutes for his turn will cause him to scream and have a big full blown meltdown, with arms and legs waiving wildly even being restrained in a five-point harness in his wheelchair. And you realize your wait time is closer to twenty minutes rather than the two minutes Noah allows.  The parent next you looks down at your child having this colossal fit and says, "he could use a little discipline.  Looks like he just can't wait his turn." 

Or you allow your child to watch too much television that's why he can't sit up on his own, or maybe he'd learn to eat solid foods if you actually fed him things that were tasty and not organic.  Noah wouldn't gag so much if you gave him more exposure to the world.  Or the best one yet... he'd learn to walk if you had stronger faith and believed in God, (without obviously knowing anything of my beliefs).

I've never had a desire to tell another parent how to go about parenting.  Ever.  Your kids - your decisions, plain and simple.   So, what causes people to throw in their two cents when it comes to a parent of a special needs child?  Outsiders somehow think that your child is fixable, or out of control and as the parent you're obviously doing something wrong.  You must be the root of the problem that your child is experiencing or exhibiting.

It's likely easier to pin the child's difficulties on the parent than it is to try to understand and accept that some things are beyond anyone's control.  When you criticize a parent of a special needs child you are simply minimizing their parenting efforts, all that they endure in a day, and are sending the signal that you have little respect for how truly hard they are trying. 

Ask yourself, what you can do instead?  What words could you chose that would be helpful and loving?

See a mom struggling with an upset child who is throwing a tantrum?  First don't let your assumption be the behavior that you are witnessing stems from a lack of good parenting.  Ask if there is something you could do to help.  Can you let them go ahead of you in line?  Could you celebrate that they found something that calmed their child - even if that sometimes meant hours of television?  Or commend them for the countless hours it takes them to spoon feed their child purees three times a day.   Or even tell them, it's okay that he doesn't walk now, but don't ever stop having hope, because every day holds the possibility of a miracle.


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

Monday, September 8, 2014

Football at the Bar

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Let me preface this by saying we are not a football kind of family.   It's never been our family sport of choice.  Chris and I rarely if ever watch a game, unless it's a special type of game like the Super Bowl,  and even then I likely just watch it for the half-time entertainment.    So when we discovered, purely on accident,  about two years ago that football was one of Noah's great loves we were in shock.   And strangely he senses the beginning and end of football season.  There is no discussion in our household whatsoever about football.  We assume Noah judges football season by the change in weather seasons.  We just aren't quite sure of his awareness.  

Noah was having a rather crabby afternoon.  A combination of lack of sleep with a mixture of end of summer boredom.  We were looking for some relief from his sour moment, and knew that there was scheduled to be a local football game on.  Noah loves to go to watch football at restaurants that have crowded bars and loads of big screen televisions lining the walls.   So we chose Old Chicago, for the purposes of it being the closest place to home.  Upon arrival Noah's disposition instantly changed.  As fast as watching a light bulb be turned on and off.

Game Time.

I'm learning to love football but for completely different reasons than loving the game.  I'm always thankful when I stumble upon happy triggers for Noah.  We made sure that Noah was seated perfectly in order to have a good view of two televisions and faced the bar.   He's very much a people watcher - especially when people are drinking.   I've always thought he appreciated that often times the tipsy are slightly more animated than most.

We placed our order with Noah's eyes still glued to the television.  He didn't even as so much as flinch even after hearing we had ordered him cheesecake for dinner.   He was super content and exactly where he wanted to be.  They inadvertently forgot to make the pizza that Chris had ordered.  So they offered him the first pizza they made for someone else - garlic lover's.  And then said they'd remake the one Chris really ordered to go.   Noah smiled, he knew that bought him extra minutes in front of the television.  I'd watch his movements almost certain he was intentionally raising his hands in disagreement with a play.

He didn't protest when it was time to leave, although I detected he would have much rather stayed.  Typically he gets antsy after eating, and is eager to leave upon finishing his meal.  He would have preferred to linger I am sure, but consented to just staring down those at the bar on the way out.  Parts of me wanted to laugh, but no one would have understood where my laughter was coming from. 

Noah waited at the door, so I could re-park our vehicle.  Even in handicapped parking with only two feet of hash lines if someone parks next to you it prohibits the use of a ramp.  Why they don't make these parking spaces more adequately spaced is beyond me.  Noah was patient with the process and we all left happily knowing that we had cured his crabbiness.

Guess I need to scout the local sports bars in our area.  Might be a long winter. 


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

Thursday, September 4, 2014

You Make Me Gag

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I remember being in Noah's NICU room, sitting helplessly in a chair watching as nurses and doctors attempted to gag my child several times a day.  A natural reflex they told me Noah didn't have.  A sign of his severe neurological damage.  Sometimes they would use just one finger, sometimes to prove a point they used more than one finger, cramming it down into the depths of his tiny, newborn throat.  "See," they said.  "He can't gag,"  as if I was in denial.   He was so drugged I often doubted the truthfulness of the finger test they kept doing over and over again.  I often thought they were using that as a tool to try to convince me into the method of starving him to death as they had requested we do,  annoyed that we kept ignoring the pushes from the social workers they sent to my child's bedside while I sat and prayed to God to simply spare his life.  

Noah never did demonstrate a gag reflex in the NICU, but that's wasn't relevant to me.  In the large scheme of things I was just fighting for his life.  In fact, I can't remember the first time I remember Noah gagging.   But wouldn't all those doctors be so proud... he gags frequently now.   No finger test needed. 

Noah's gag reflex is a part of his sensory processing challenges.  The gag reflex to Noah is how he's able to signal that something is overwhelming him or upsetting him, and if I fail to remove what ever it is that is causing him to do this, he'll gag until he continually vomits.  The problem being, I don't always know truly what is causing it.   This morning I greeted him, getting him dressed and ready for the day and he gagged.  Maybe he didn't like the shirt I was wearing, maybe the light in his room was too bright, much too soon.  Maybe he thought the smell of his urine soaked diaper was too much, maybe the socks I put on him were too pilled and not soft enough up against his skin.  I don't really know.  There are several things that set Noah off, and while I'm good at guessing what the trouble might be, I'm by no means an expert... yet.   

It didn't happen for many years.  I want to say maybe it started around the age of three.  Now it's clearly a defense mechanism for him.   It is the fastest way he has to tell us that something is bothering him.  In the beginning I blamed myself.   First it started out with self-hate for allowing anyone whatsoever to put a finger down my child's throat for the sake of trying to medically prove the extent of my son's neurological damage.  Then the blame came in forms of I'm overwhelming my own child, to blame that I didn't know all the exact triggers - and I still don't.   Sensory processing disorder (or SPD), often has a tendency to make a parent feel like the failed somewhere along the way.  I don't know if Noah's sensory gag reflex could have been prevented.  It's especially hard to work on when there isn't any clear understanding of all of Noah's triggers. 

I know that he prefers super soft clothing and that touch, smell and noise can all be triggers.   But sometimes he can just look at me and gag, and I can't say that my heart doesn't sink just a little bit when that happens.  Because I wish it didn't.  Because I wish I knew how to help him get past it.   Because I love him more than life itself.  Because it's one more thing that leaves you feeling completely helpless as a special needs parent.


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

Wednesday, September 3, 2014

Swimming Upstream

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Biologically various species are just hard-wired a certain way.   Just as salmon swim upstream against all odds and all difficulties, they do what they have to do because they are determined to achieve their goal and they don't allow obstacles to detour their goal.   Human nature often is the same way.  We can't help it.  It is this instinctual drive.  I find it profusely in myself and other special needs parents.  This goal... this quest to make our child's life the best that it can be.

Now, this shouldn't be confused with the desire to "fix" or child, or "cure" our child.   This instinctual drive comes in forms of trying to get the world to embrace our child, to offer them basic comforts, the ability to participate in the world around them, opportunities that aren't readily available or offered to them, exploring therapies that could offer their bodies relief and assistance, equipment that allows them comfortable support and safety during their days, and even recreational resources that simply allows them a childhood. 

I can only imagine the amount of invested hours I've spent hunting down equipment for Noah, exploring therapies that might assist him in various ways, and advocating for his daily needs.  I do it because it is a drive that I cannot ignore.   When you are a special needs parent there is no path of least resistance.  So swimming upstream it is.   Admittedly, no matter how hard I try to line up all the cards to help Noah a ball always drops here and there and it's hard to pick up and either change directions, or find another route. 

Therapist changes are always tricky.  People move on.  I had a career once upon a time too, and I know what it's like to want to strive to do better and advance, so by no means are therapists exempt from that same drive.  Therapist turnover lately has felt particularly high.  And I often get attached to people that work really well with Noah so when they move on to other career endeavors you feel like you're starting all over, building a new relationship and trying to connect with another personality that clicks with your child and us as parents.  And sometimes a therapist moves on, and their agency decides not to replace them - equally as hard as that really often times shuts the door completely on a type of therapy you once were doing. 

Recently, I learned that an equipment vendor, named Fred Storey, that I relied heavily upon for importing items from the UK that I couldn't otherwise find a way to get has closed for business.   They were the only vendor I had willing to send me anything from their inventory - provided I could find a way to fund it of course.  I feel like I kind of lost something really important to me.   Not only did this vendor have an amazing selection of special needs equipment and sensory items, but they were unbelievably kind and loving qualities that are often rare to find in a business that deals with special needs here in the US.   Noah's sled was purchased from Fred Storey and I contemplated so many things that I wanted from them but I didn't have the money for.  Dream items.  Things that would have been just lovely for Noah.   They were good to me - they were so good to Noah.   And I'm so thankful for their services and the difference that they made in my life and in the lives of so many like him.   They will be missed I am sure by many.

It feels like I'm starting all over again.  Finding new therapists, trying to make new connections, finding new equipment resources and options for Noah.  It is much like that feeling when the rug is pulled out from underneath you.  One would think that special needs parents adjust faster than most to change.  After all we've faced the ultimate life-changing event just by having a child who has special needs.   But we're not subject from a routine that feels familiar, a therapy your child loved and can no longer do, or having a connection to help and support and that all suddenly disappearing.  Our calendars and phone books have this line-up, you know who to call for what you need, who is trustworthy, who you can count on to deliver for your child.   Then one day poof... gone.  There goes a whole section of your Rolodex.   And so you start over because you are forced to.  Special needs parenting requires dedication, perseverance, and reliance of knowing you have to swim upstream. 

"Every new beginning comes from some other beginning's end." - Seneca


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