A Family of Miracles - Brystal Sonoma's Story

Today marks the one year anniversary of the brutal and vicious attack of one of our beloved Cairn Terriers, Brystal Sonoma.   She was in the comfort and safety of her backyard when a coyote jumped the fence.  Brystal is such a soft soul.  Both of our cairns have qualities specific to my personality (as most dogs do).  Hollie Edelbrock is brave, protective, loud, loyal and loving.  Brystal is tender, wants to make friends with everyone and anything, she wants to lick your wounds, and is a natural healer and most of all trusting.  That trust allowed her to fall pray to a Coyote.  Hollie's instinct was to run for safety, Brystal's was to run towards unknowing danger in the form of what she thought was a friend.

Brystal's jaw was ripped at the hinge and broken in three places, multiple puncture wounds throughout her small and fragile neck.  Her jaw bleeding profusely hanging from her head, but still had the wherewithal to run despite her severe injuries into the house and under a bed seeking safety to save her own life.  I called the nearest emergency veterinary clinics, at 7pm at night they all denied me care due to being too busy.  I told them I was coming anyways and that I would not let them turn me away.

Brystal was clearly in so much pain, shaking, in shock and suffering from tremendous trauma.  But the look in her sweet eyes said nothing but please help me and that I'm sorry.   She was sorry that she was in this position, to no fault of her own.   She paced back and forth, breathing heavily through the pain.  It felt like it took forever to get her the morphine she needed to ease her pain until we could truly assess the extent of her injuries.  The emergency clinic worked fast, xrays were done on the spot - the prognosis a bit grim.  She was stabilized overnight, but her injuries were so extensive that no local vet could assist.  The vet didn't give us many options or hope, it was rather the secretary who whispered take her to VRCC - Veterinary Referral & Critical Care.  And told us they would be able to help.  The drive was super far, and my husband and I left Noah and his brother with respite, and made the long hour drive there.

They assessed her quickly and made the determination that they thought that they could fix her - that she had the small potential to survive.  But it would come at a great cost.  It was already $2,000 to get it through the night at the emergency clinic, we were facing another $4,000 for life-saving surgery of repairing her jaw, and then another $4,000 after that for reconstructive internal mouth surgery, and bone grafting.  No one wants to hear that, especially when you are a special needs family who is already financially struggling with out of pocket medical, therapy and equipment expenses not covered by insurance.

But we believe you can't put a price on a life - not even a dog's.  Every single life should be fought for - and God willing you figure it out as you go. We consented to the surgery and the costs and less than two hours later Brystal was in reconstructive surgery.  We sat, we waited.  We stayed until she was out of surgery and it was a success.  They drilled through her jaw with an exterior x-fix, and braced the broken jaw and placed it back in place.  She looked terrible, and the device looked heavy and uncomfortable.  But, we were far from out of the woods.  The chance for infection high, we'd have to figure out how to get her to eat - and stabilize her for the next four months until she could heal and have additional surgery to remove the x-fix and then reconstruct the inside of her mouth with bone grafting and tooth removal.

Brystal is a non-complainer.  And her tolerance for pain much higher than our other cairn terrier.  Her will to live also significantly stronger than what I think our other cairn could withstand.   If any dog had a chance it was Brystal.  The world's smallest fighter.

I've seen that same fight drive in Noah.  That will to live.  That I will fight at any cost to be here - even if it's not perfect.

I was no stranger to that fight drive, and so I made the decision to fight alongside and do what I could.

It was a very hard first few months.  Brystal wouldn't eat, I was forcing syringes full of water to keep her hydrated, and ultimately had to resort to pureeing all her food and syringe feeding her that too.  Slowly she'd eat strange things like tiny amounts of canned tuna, or sliced deli turkey.  We tried every soft dog food brand on the market, I must have spent hundreds of dollars trying and trying some more.  I tried to put the costs out of my mind and just do what had to be done.  I know we were sinking ourselves financially even more by making the decision to save her life.  But she was family.  No one gets left behind.  Not even the family dog.

She'd have good days and bad days.  The bad days were super hard as I'm caring for Noah and then turn my back to see blood dripping all over the floor feverishly from her mouth.  Multiple emergency trips back one hour each way - determined that the x-fix had gone through several teeth and was now protruding into her tongue so every time she moved her tongue it would be punctured and bleed.  They could do nothing to prevent that or it would harm the stability of the x-fix.  So, I'd be mopping up trails of blood for months on end in addition to carrying for Noah's needs too.

I never once thought of any of it as an inconvenience or burden.  Not Noah - not Brystal.  Like a well-oiled caregiving machine I did what had to be done.  Three times a day forcing medication, three times a day cleaning her x-fix that was crusty from blood and fluids that leaked out of open drill sites on the exterior of her mouth, faithfully applying saline and antibiotic ointment.  It felt touch and go, and I did a lot of praying that we'd get through it.

And in April of 2019, Brystal had finally healed enough to have the x-fix removed, but we weren't out of the woods yet.  Two more surgeries were in her future.  She'd have to be sedated for the removal, and then was facing internal mouth reconstruction two weeks later.  She came through the removal well, we were still guarded. And two weeks later seen another specialist to reconstruct her mouth. She lost almost all her teeth, many from being damaged in the attack, many from being damaged as they drilled into her jaw with the x-fix to save her life.  But she came through both, and with amazingly high spirits.

This dog is really a true testament to resilience and how much a life can withstand if they really want to fight to be here.

By the end of it our bills collectively were over $7,000.  Most of it was put on credit cards, but it ultimately resulted in us having to refinance our home over the summer.  We have no regrets.

Today, Brystal is thriving.  She acts much like the energetic little bouncy puppy that runs and skips along like a baby bunny would.  She's remains a delight to have, her spirit a reminder that you can get through the worst that life can give you and still find a happy ending.   Brystal will celebrate her 14th Birthday in March 2020.  And her age was never a factor for us saving her life.

We know that not everyone could understand or even agree with the decisions that we made to save her life, and that's okay with us.  Having a child like Noah, and having to fight for his life I think left a mark on us.  And so when someone tells you there is hope - you fight for that hope.  God will see you through, it may be incredibly hard and you may not know how you're going to make it happen or get through it all.  But, you will.  You just have to have faith.

So this Thanksgiving we are incredibly blessed to still have our little Brystal with us.  She was granted more time to stay, and we are so grateful that we more days with her.  Believe in Miracles - miracles may not come easy - but they do happen.

Love,

 


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

Looking Back

Maybe it's part of the human condition that purposely tries to block out all the bad.  If we dwell too long in the hardship then we lack the ability to properly move forward.  But occasionally, as life often does - it will remind you time to time of the past.  Sometimes you have a profound appreciation for how far you've come, the obstacles you've conquered, pride in perseverance - and other times sadness that you ever had to be in that position in the first place.

I've been on this special needs parenting journey now for more than a decade.  The past and present both bumpy.  In the early days I didn't really have any clue what I was doing.  I was lost.  Completely lost without a roadmap on how to navigate anything.  Therapies, appointments, bad news, how to process even a multitude of emotions that hit you simultaneously - the financial strain, the sleepless nights, the endless worry - and the profound adaptation and acceptance that your life will never have any sense of the normalcy it once did.

I got an email today inviting Noah to receive a letter from Santa through a non-profit organization we used when Noah was days old called There With Care.  They are an organization that coordinates various types of help.  Noah was sent home on hospice of sorts - the Butterfly Program.  A team of people assigned to you that you call to assist you with arrangements when your child passes away, and alongside that came a There with Care referral.  I couldn't return to work, ultimately resulting in my resignation of my decade long legal career, I lost my transcript business because I couldn't keep up with the demands of running it while caring for a neurologically distraught baby who's disabilities became more apparent with each growing day, and voluntarily gave up assisting with a nursing call center in the middle of the night. I found myself instantly with large bills that Medicaid didn't back date for flight for life, all the while trying to figure out how to feverishly pay our mortgage and other bill obligations on one income.  I wasn't present in the moment.   My heart was blown apart, my world felt uncertain, and I kept focused on just simply doing everything within my means to keep this precious little boy here on earth with me. 

I had forgotten about There With Care - although they serviced us for the first year, they brought us groceries, they provided meals, they gave Noah baby gifts, and baby supplies that we needed. It's odd how we don't really forget, but that we put things out of our mind - to move forward with the next chapter or the next challenge. Had I of not received that email invite to have Noah receive a letter from them, I'm not sure that they would have crossed my mind.  Not even in the capacity to recommend that resource to another family.  Perhaps we block out such things for self-preservation or because we are simply so overwhelmed that we're trying to get from one point in our lives to the next.

I had filed it within myself long, long ago.  A place perhaps that was dark and irresolute. I'm not sure what I would have done without someone just navigating all of those types of things on our behalf in the early days.  It was like I was present - but not fully present at the same time.  Memories can be interesting like that on the special needs journey.  Where something can just instantly remind you of a moment in time.  And then again sometimes things come full circle, a humble reminder of all the hard places you've been and how blessed you're still standing after all of it.  Looking back is harder for me than looking forward.  And looking forward is still very scary too. 

Never did I ever imagine that the very organization that was our life-line in the beginning would wind up sending my sweet Noah a Christmas letter from Santa ten years later. Blessings never forgotten, and blessings still yet to be received.

 Love,
 

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

Raising Dion: Disability Hit and Misses

I was really excited to watch the new series Raising Dion on Netflix.  Besides personally knowing the little girl who plays a supporting role in the show, I was very pleased that the show cast a character that both has a disability in real life and in the series.  Sammi Haney, plays a little girl named Esperanza, who is a friend of the main character, Dion. 

The premise of the show is a boy that has the sudden onset of super-natural abilities, and the complexities of having those "super powers" as a child learning to navigate them, and how his widowed mother learns to cope with her child now being a very different little boy, than the one that she was familiar with.  The show introduces Sammi's character rather early in the series which I was glad to see. 

However, my disappointment grew with each additional episode.  The story line was pretty predictable and felt like almost like a copy-cat to most super natural television these days. The acting from all the children was strong and their chemistry matched well with each other. Watching Sammi act was much like knowing her in real life.  She's just naturally this charismatic sweet child, and you can't help but fall in love with her.  She's a child that exudes positive energy and happiness.  If it was dark out she'd literally light it up with her personality like a glow stick, so I'm not surprised that she was chosen for this role.

That's part of the reason I'm let down with the series.  They had this huge opportunity to showcase her more, and she became almost hidden in the background, with what felt like a guest appearance here and there.

The character of Esperanza is depicted as a child that sees herself as "invisible." Her peers primarily ignore her, in fact even Dion finds her annoying and through the majority of the series does his best not be associated in any way with her as if she's an embarrassment.  It isn't until she serves Dion in attempting to retrieve his asthma inhaler during a crisis at a birthday party that he even gives the friendship a chance. The show has this precious character in Esperanza and no one really wants to be her friend - not even Dion in the beginning. 

One of the most redeeming scenes was one with Esperanza and Dion happily sharing birthday cake in the back seat of her dad's van.  I also think they did a very poor job with the whole accessible vehicle when it came to how Esperanza was transported around.  There are scenes where an apartment neighbor whom Esperanza's father doesn't even know or is connected with is instructed to drive the family van to get her to the birthday party.  It was unrealistic that any parent would hand over an accessible vehicle to a stranger they didn't know to drive their disabled child anywhere.  Especially without any explanation as to why Esperanza's parents weren't the ones driving.   

The show had a perfect window of opportunity to show out of the gates that children with disabilities have just as strong of friendships as those without, and blew it.  Instead they made Esperanza a cast out of sorts, coming on strong wanting Dion desperately to be her BFF, despite his first rejections of that idea.

The show also took a turn I didn't really love.  Instead of focusing on this great story line with a child with a disability as a supporting character, they decided to focus on racial profiling, which had nothing at all to do with the story line.  It felt forced and out of place.  As if they threw it in there to support a climate of intolerance.  I didn't love it.  And then they took it step further to imply that if you have felt that you were wrong by a racial feelings, that revenge was perfectly acceptable as another character trips the offender in a school hallway as a payback of sorts.  For a Netflix series dealing with a story line involving very young children that all just missed the mark terribly for me.  It really was an out of place "problem" for the series and didn't at all fit whatsoever with the point of the theme.  The last thing we should be promoting is a revenge-like thought pattern to a childhood school injustice.

I kept eagerly awaiting for them to touch upon Sammi's diagnosis, or a better explanation of why she was in a wheelchair.  Sammi Haney has a Osteogenesis imperfecta (OI), also known as brittle bone disease.  Never once was her diagnosis ever discussed much less mentioned and Netflix had the perfect window to spread awareness about the condition and just fell completely flat. 

There is a moment when Dion uses his powers to assist Esperanza with floating and standing as if he wishes to see her walk.  Esperanza gets very hurt by this, and it causes some minor hurt feelings.  Dion reflects on his actions with the help of his mother's feedback and decides he owes her an apology where he explains he realizes she is not broken and doesn't need to be fixed.  And while true, those with disabilities don't need to be seen as broken, in some aspects the condition of OI does cause bones to break more easily. 

I'm really hoping there is a season 2 for Raising Dion because they underutilized the character of Esperanza, and they could have really done better showcasing a character with a disability.  Raising Dion was highly predictable and the use of the music theme used in another Netflix series Stranger Things, was a dead giveaway to the hidden villain.  I wouldn't have stuck with it, had it not been for desperately wanting Sammi Haney's character to be given more screen time.  She was just sprinkled about almost as an after thought or what felt like a move to have one foot in the door with the disability community.

Dear Netflix, you can do a million times better.  Now get that Sammi Haney a leading role or at the very least show us that you can step it up with a season 2.  Don't leave Esperanza behind so much in the background.  And fix the tone you left us with that those with disabilities are friendless, invisible and annoying.  They are anything but. 

While I had hoped it would be a great family series for my children to watch, I can't say that it meets the mark of the theme I wish my children to see.  I don't like the racial profiling theme nor the depiction of revenge.  I don't want my children to think that those with disabilities naturally are friendless or have to beg for a friendship, or to be seen as annoying or an outcast of sorts.  And the super-natural part with a person in a position of trust being the villain made me very uneasy.  You have a very small child essentially engaging via texts on an IPad messaging game with someone he thought he could trust who wants access to kill him.  Netflix in my opinion shouldn't be marketing this as kid friendly, it was much too dark with tones that simply didn't have as much of a positive message as they needed to have for children. 

Here's hoping Netflix steps it up next time.  This one misses the disability mark.

Love,



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

The Nightmare called "The New Target"

I don't think many people relish change.  But in the land of special needs sometimes the word change can send shivers up and down your spine as you anticipate the shrill and shrieking of your child with special need's screams if the unfamiliar gets yanked out from underneath them. 

I kind of feel that same way with Target's new store make-over.  It seriously feels the moment you walk through the doors like someone put you inside a snow globe and shook it up while you're spinning around dizzy.  What the hell? feels like an understatement.  People are raving about how some Target stores now have a Disney section, and how home decor just now sprouted as if Target just became a wannabe furniture outlet in the middle of retail clothing and home goods.  Wasn't it enough to mix grocery and retail?  Really Target.  You are blowing my ever loving mind.

And I liked Target.... the old Target that is.  It ranked right up there with my top fav's alongside Kohl's and continuous trips to Starbucks.  And as much as I dislike the special needs poem Trip to Holland, Target feels a lot like that.  I expected a normal trip.  A familiar trip.  A vacation to potentially a mildly redesigned store, that had more clothing and shoe options and maybe even sprinkled with more organic food inventory. 

What did you do to me Target?  I can't even find the baby food section anymore.  As my child in a wheelchair stares at me like he's also landed on Mars.  Nothing makes sense.  The layout is disjointed, the isles go sideways and horizontally, and before you know it you're staring at kitchen spatulas when all you wanted to do is just find paper towel.  And it's not all that wheelchair friendly.  You can easily get stuck on an isle with a grumpy person staring you down so you know your only alternative is to throw that wheelchair in reverse and attempt to find yet another small isle to see if you can get down.

Why Target?  Just why? 

This totally took your ranking of one of my top stores down to at least 15.  I don't have the time to spend three hours touring your store for the 5 things I simply need on my list before I both have to feed my child and sprint to his therapy.  I miss the store I once knew.  I miss the feeling of it being simple and easy, and now it's complicated and hard.  And I have enough hard in my life everyday Target.  From the moment I get up it's hard.  Now you have to make my retail experience hard too. 

While I pout I will at least give you credit that you didn't eliminate Starbucks and that that my internal GPS can at least still scout that out, because right now that feels like the only benefit to even walking into your store.

Signed one, sad, forlorn and lost special needs parent shopper.

Love,



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

Thunder & Lilacs

Perhaps it's been too long since Noah was really sick and I just became too comfortable in stability. Or maybe I try to purposefully block out the scary dark corners of his fragility so that I'm not overly frightened of what I know could happen in situations like these. I knew something was wrong by the sound on the monitor. That gasping, choking, blockage of airway sound that he makes. I ran as fast as I could, leaping over a dog in the dark hoping I could get there faster. It wasn't fast enough though, whatever had caused the airway blockage whether it be secretions or acid re-flux or a vomit that never made it to the surface of his mouth, it landed in his lungs- aspiration. I sat him up, yet I could still hear him struggle to clear himself. His father, looking on at us both in the doorway of his bedroom as I cradled him on the floor. We both knew. But had no words to even say in the moment.

The following morning it was obvious that something was wrong. Noah's happy spirits were diminished. He was in and out of episodes of sadness, his motivation to furiously tear apart pages of coloring books had just vanished. And he just laid there looking at us as if the a bigger storm was brewing. Noah was giving us all the classic signs of things were taking a turn for the worse.

We offered him a walk to give him fresh air around the block. Afternoon storms almost like clock work now, were moving in all around us. Dark heavy clouds, that were wispy and full of rain danced above me as if to remind me of my perpetual life's storms. We turned the corner on a path that leads to open space for as long as you can see. It's like looking at the ocean's horizon except it's all field for as long as you can see. And along the path every ten feet there are massive lilac bushes. The bushes so well established they are enormous in size and in full bloom. Their scent was overwhelming. Although pleasant under most circumstances, I found their alluring perfume to be invasive on my mood. The smell of something delicate and beautiful while I was under moving rain clouds above me, seemed off-putting. Almost as if nature was mocking me and laughing at my inner distress.

Noah's cough presented itself loudly, almost as loud as the thunder in the background. I watched his little brother ride ahead of us on his bike focused on his little legs pedaling. Keep pedaling I told myself. We passed a new dog behind a residential fence on the path. Must be new neighbors. The dogs prior were obnoxious and loud and very ill mannered. They would startle Noah every time we walked by with their barking and antics. This dog, a pretty Irish Setter, stood stoic in one place right at the fence almost as if he was paying respects to Noah as he walked past him. I wondered what his name was, or even how much I appreciated his calm demeanor as we passed by.

Noah coughed again, and my mind shifted from the dog to what my mind just wanted to forget. Noah was sick.

Heavy guilt exists, like if I could have gotten to him more quickly, if perhaps if I hadn't fed him ice cream at the zoo too close before bedtime with a spoon he wasn't familiar with, if I had done this or that - then maybe the outcome would be different. An all too familiar feeling that I carry like a gorilla resting on my chest for years. If only I had birthed at a different hospital... if only I had looked at the ultrasound monitor myself... if only...

The "if only's" can be so paralyzing. The mind's desperate attempt to go back in time and fix all the wrongs. But the "if only's" do nothing to help us in the moment. They merely haunt us because we are powerless to go back in time. And in the now, I have to deal with what is before me - Noah is sick.

I dreamed of heavy rains falling down on the lilacs. They still smelled fragrant, and the moisture from the rain made them only intensify in deep purple color. Lightening hit a nearby tree, and I was awakened to the sound of Noah needing me in the night. A low-grade fever. I reached for the liquid suspension Advil only to find it had been expired since February of 2018. Over a year expired. I googled quickly the safety of an expired medication, and felt comfortable enough to give it to him in a pinch. He fell back to sleep rather quickly as I sat up in bed just thinking of those lilac bushes in the rain.

It's odd where our mind wanders in times of great stress and fear. We fixate on things in the moment -- a bird... a lilac bush in the rain.

Love,



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

You Know Your Own Child Best

Mommy Groups.  I think sometimes they can be the root of all evil.  Social media has developed into a very ugly thing.  It's of course sprinkled with hints of positivity, sometimes camoflaughed good intentions, and even sometimes idiots in disguise.  A forum where everyone thinks they know it all, and are quick to cast stones.  I used to be a bigger participant than I am now in support groups, mommy groups or special needs groups.  Now I am merely mostly a fly on the wall watching the mud slinging back and forth.

Sometimes I roll my eyes behind a computer screen at what people find critical in their day; a mom complaining about how sexualized yoga pants are for a sixteen year old and wanting the community to ban them from schools so her son doesn't get a hard-on during math class; the parking line up at school and who should get top priority of drop offs; neighbor complaints - that's always a big one.  Every one and anyone seems to get on the world's nerves.  Man you could walk to your mailbox in flip flops after a snow storm and someone is going to post about it and how much your freedom to do that ruined their day.

I ran across one post today though, which was like one of those what place it is of yours posts.   The kind where you're like butt out it's none of your business.  Even though everyone seems to think they need to make someone else's business their business.

It was a mom, under the pretense of being an amazing friend.  You know the kind so amazing, that she doesn't want to hurt the tender and delicate feelings of her close friend but feels obligated... no correction - compelled to tell her friend that she feels that her child has special needs because he's not developing or succeeding as fast as her child is at the same age.

Enter big eye roll. 

First, that's not true friendship.  That's a competition of who's kid is better, brighter, smarter and excelling quicker.   Moms news flash:  it's not a race.  If a child happens not to talk clearly as a toddler it doesn't automatically mean they need a speech therapist.  Trust me I know this.

Luke didn't speak a word until he was three.  Three years old.  I didn't sweat it.  I wasn't saying oh God, I must have two special needs children.  One severely disabled like Noah, and one that won't talk to me and must also be non-verbal.  I had countless people cross lines with me when it came to Luke as a baby and toddler.  Many of which were some of Noah's former therapists.  They picked Luke apart with the assumption that if Noah had a disability that therefore his little brother was destined to as well. They see the correlation that you have one child with a "problem" so they assume your other children will have problems too. There was genuinely nothing more irritating than someone trying to step in and tell me my other child also had problems.

Luke was focused on for being left-handed, for speaking later than most kids his age, and for his need to be extra clingy and co-sleeping with us until the age of five.  I knew as a mother, there wasn't anything wrong with Luke other than he was choosing not to talk.  His receptive communication with us was just fine, he was using gestures to get what he wanted, and I knew what I was up against was that he had nothing to model communication from when Noah was showing you could have your needs met by not saying a word.  As a mom I just knew there was no real problem.  I sensed it.  I knew.  You just know as a mom if you have a child with a problem or not.  You just do.  All of us have that sense about our children.  And the day Luke decided to talk, it wasn't just one word like momma, dadddy or ball.  It was a full out mind blowing here's your first sentence that I've been holding in for three years.

To this day, Luke is a naturally quieter child.  He will only speak if spoken to, and only if he feels like he wants to or it's worth his time.  But if he does watch out because he will talk your ear off - especially if you mention anything about the ocean and sea life. But there isn't a single thing developmentally wrong with him. He's still left handed, but I don't see that as a disability, (or something that needs to be corrected by tying your hand behind your back as a therapist "kindly" suggested I do), and I happen to love that he's clingy because I know someday he's going to grow out of wanting to hug and love on me and blow me kisses before bedtime.

I can tell you a parent automatically knows if there is a problem or something off with their child.  They just will.  It's evident to them whether it be a sudden onset or something they have seen coming on all along.  And if they don't notice a problem with their child.  Chances are there isn't one.  So you stepping in on a mommy board looking for advice on the best way to approach your friend to tell her that you feel her child needs a speech therapist, just because he's not keeping up with your kid - signals to me that you aren't such a good friend.   How about you mind your own garden and tend to your own flowers.  If a mom thinks there is something wrong with her child she'll speak up and inquire and ask and seek help.  Stay on your side of the curb and don't play the superior game my child is doing A, B and C before yours so that must mean something is wrong if your child isn't keeping up with mine.

Not all typically developing children get to the finish line at the same time.  Same is true for children with special needs too.  They are all different.  It's a mixed bag when it comes to who accomplishes what and when.  Everyone is on their own time line.  It doesn't automatically mean a child has special needs because they aren't keeping up with yours.  And it's really not your place to even suggest such nonsense.  And while you're at it, quit playing the passive aggressive I'm the nice mommy just trying to help out my good friend.  No you're not.  You're the mean mommy that wants to play I'm superior and so is my kid or you wouldn't be posting on social media how best to approach your friend with the suggestion that her child has special needs and needs a speech therapist.

There is no more single best expert in your child's life than you.  And people tend to either be so bored that they just can't mind their own business or they purposefully find ways to be a problem for other people.  Don't let a "-foe-friend" in competition clothing bother you.  Just keep rocking your own mommy inner compass about your own child.

Love,

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

I Communicate When I Cry

When Noah was a baby he cried for 18 hours out of 24.  He was so distraught as a baby.  I'd bounce with him on an exercise ball to offer him vestibular input, listen to the radio in a desperate attempt to soothe, walk with him, hold him, rock him in my arms, lay him in a bouncy.  I'd do anything and everything and yet he still cried.  The first year was hard.  Until one day he discovered the world of Elmo and Sesame Street and just like that a light bulb went off for him and we found something that offered him comfort.  The TV.  I thought I was going to lose my mind.  You could so much as smile at me that first year and I would have broken down into hysterical tears.  I was overtired, feeling like I was failing, trying to navigate a world of therapies that I was unfamiliar with, a new mom to a child with special needs and dealing with the most distraught baby that you could ever imagine.

Noah is ten.  He still cries.  Not the same kind of cry as a baby.  But still cries and frequently.  As a non-verbal child, it's often his only way of communicating distress, pain, disagreement, agitation, or when he's ready to leave somewhere, or even when he's ready to go and I'm not moving fast enough for him.  There are lots of reason he cries.  Most of which I know, and some that I'm still learning.  I've never been a cry it out method mom.  Even for my typical child, Luke.  To me when a child cries, that means that they need you in some way.  And comfort has always been what my instinct has told me I need to do.   It's still like that if either of my children cries.

There's been a lot of talk in the special needs community recently - especially when it comes to a non-verbal child and do you let them cry it out?  Do you impose punishment?  Or do you console?

Noah is cognitively very aware.  He understands everything although he's trapped in a body that is physically limited and challenging in every single way possible.  Yet, he still is learning to navigate an AAC device, but even with a device - he's always going to have to rely on communicating with us through facial expressions, through vocalization tone and sounds, and through moods and emotions (example, being happy, sad or angry).  Non-verbal children just communicate very differently. 

Noah will frequently have meltdowns or get angry and cry if something is wrong - like his movie ended and I need to restart it, or if he's out of coloring book pages to shred, or if his brother took a toy away from him, if he needs to be changed, or if he's pissed off that his therapist was scheduled to be here and she is sick or can't come for whatever reason, or he doesn't get Chick-Fil-A on Thursdays.

And by meltdown it's the most heartbreaking cry you can imagine.  The kind that penetrates your soul where you just ache to make it all better.  Crying it out or punishing Noah for trying to be self-expressive to me has always felt like a cruel approach.  Not to mention that if I don't find a way to soothe Noah or make whatever it is that is troubling him better, he could frenzy himself so bad into vomiting, chocking and aspirating because he gets so worked up.  Being upset to Noah poses a safety risk to himself. 

You also can't negotiate with a child like Noah like I can with his little brother Luke.  I can't make deals, or bribe with treats or toys - it's an entirely different ball game.  A lot of parents take the approach disabled or not that kids are kids and both deserve to have the same set of punishments or rewards.  But raising two very differently-abled children I can tell you that rewards and punishments are not even close to being the same between a disabled child and a typical child.  Noah is by definition severely disabled.  He can't walk, talk, crawl, sit or self-feed.  I can't say to him you deserve to sit in a corner, or be banished to your room until you chill out, calm down or quit crying.  Likewise, there isn't anything Noah has done wrong other than try to communicate to me that something is wrong and he's trying to tell me what it is.  That's not a crime, never will be.  Nor do I view it as any form of manipulation on his part.  He relies on all of us - the entire family unit to assist him with his needs, his wants, and to help him be comfortable, healthy and happy.

To punish Noah for trying to vocalize a problem he is having would be a tremendous disservice to encouraging him to find ways to communicate with us - even if it's in the form of crying or screaming he needs to find ways to get our attention.  As Noah grew older, and the crying continued way past that of a normal age of a baby and toddler, I would stop and think about how I'd feel if it were me.  And I were trapped in this body, fully aware and completely unable to tell someone that I needed something or that I was upset.  And I would look at him with such admiration for not screaming every single second of the day because damn it's got to be hard to be him.  And he's really a joyful kid for the majority of the day.  He has learned the art of using the crying and screaming when he needs to use it.  It's not his state of perpetual unhappiness. 

And sometimes Noah is like the rest of us - where he just needs to be held, reassured and loved on and consoled through a rough emotional moment.  I never want to find ways to discourage him from using any form of communication he needs - even if that is crying and screaming.  I don't see Noah as being spoiled, I don't see myself as encouraging bad behavior from him, and I don't see myself as a parent who is failing him because I'm teaching him that he can't always get his way.   Sometimes a child like Noah simply does need to get their way.  And that's okay.  There's nothing at all wrong with that.  He's always going to be fully dependent on someone his entire life.  Promoting all forms of communication in our house has always been our goal.  And when Noah cries, it's our job to figure out why (because there is always a reason behind it), and help him through the moment. 

It might look to an outsider like we're not disciplining our child, or that we are promoting them acting out.  Know that crying and screaming for many non-verbal children is just another way of communicating. Trust that we know what we're doing a special needs parents.

Love,

  

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