The Changing Tides of Special Needs Parenting & the Cycle of Grief: We’re Lucky. But Sometimes It Doesn’t Feel That Way. [Featured on the Mighty]

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The morning surf-check is one of life’s delicacies. A day of clean waves is nothing short of a gift from God.

Unfortunately, the clean lines that surfers crave do not always march to shore. When the variables – wind, swell, tides, etc. – are not aligned those clean lines become a mass of confusion, some days/hours/minutes more threatening than others.

Those messy, threatening days do not dilute the fortune of living by the sea. The stormy moments offer a richness that would be lost if every day was nothing but clean lines.

Similar to the rogue wave or sudden storm, life’s engineering does not always match the forecast.

The Mrs. and I have shared the beginning of our special needs parenting journey:

As this special needs journey continues, the richness matches the beauty of the sea – unfolding in calm breezes, clean waves, and favorable tides. And unexpected storms.

Unfortunately, as any surf forecaster will tell you, ignoring the storm does not change the foreboding path. Storms will arrive. And patterns will repeat.

There is a cycle of grief. And this cycle repeats. Despite my best intentions to change the unchangeable, I recognize this cycle because we experience the raw emotions – on repeat.

  1. Denial
  2. Anger
  3. Bargaining
  4. Depression
  5. Acceptance

We work through this grief cycle individually and as a family. We manage this cycle as best we can, and I’d like to believe we are improving with each repetition.

We yearn towards the clean lines of acceptance, and we revel in the warm sun and cool breeze of our strong, loving family. The majority of our time is spent enjoying the amazing waves of love and happiness that ALL special needs parents know.

But we need to mindful of the forecast. We don’t know when the storms will blow through, and we don’t know how hard we will need to bear down to remain grounded, but be prepared.

It’s amazing what a well-timed hug or good cry can do.

We’re lucky to live by the sea, but we’re even luckier to be special a special needs family.

Our New Normal {Awesome Mack}

This post has been 1 year, 72 days and two hours in the making. Hands down the hardest post anything I’ve ever had to write. But it feels good. Cathartic.

Mrs. Dude already shared some thoughts on her fabulous blog. To offer a preface to this post, many similarities below. That post was a bit of a collaboration – Mrs. Dude’s words, my editing. No need to recreate the wheel.

The Mrs. has received some amazing comments and messages from her post – heartfelt, inspiring and loving. Awesome.

But the best message – impeccable timing, but completely unrelated to the post – came from our own house. Princess penned the below gem today in her daily journal…

Awesome Mack

I love our little Mack. He is so nice, kind and sweet. One day I think Mack is going to grow a long mustache and plant flowers. And do yoga.

Nailed it! Future Mack seems super rad. The Dude is going to dig that cool cat.

Yes, that awesome picture did accompany the journal entry.

So what’s all the hub bub about Dudeski?

There’s not a lot to say, and at the same time, there’s so much to say.

His first birthday was perfect. No walking, no talking. But every rug-rat develops at their own pace.

Then the stress kicked in.

We began to question things when the party was over. We heard concerns from both Grandmas:

“Does he say any words? None?”

“He’s not using his fingers at all…still raking.”

“Notice his right foot? It drags when you help him walk.”

We started to consult Google. 12 month milestones. Yeah, not hitting many…any?!

We missed our 9 month appointment. Life moves fast with three! But, thinking back Jazzy Mack hit milestones up to 6-8 months. Then the milestones started to slow down.

Still in denial, the Mrs. and I countered with:

“He’s a quiet kid.”

“He has his sister and brother to do everything he needs.”

“Some kids just develop slower.”

Since both Grandmas also happen to be longtime nurses, we decided to listen to their concerns. We made an apt with our pediatrician to get her input. Concerns confirmed. This appointment has now led to many more – hearing test, thyroid test, a developmental specialist…

The first step was a pediatric developmental specialist. I was traveling for work. Yeah, not the best time to be apart, but the appointment came quick. And we had confidence in our handsome boy.

The development specialist is great (so I hear). She spent 2 hours conducting a very thorough exam – playing with Jasper and asking a lot of questions. As the appointment closed, she said the words that are forever locked in my noggin,

 “I think Jasper has cerebral palsy.”

I wasn’t there to hear the words come out, but I sure did feel them on the other end of a phone.

The Mrs. called me on the way out to tell me the news. We talk (I cursed…a lot), some tears are shed, and we just sit on the phone in silence. Hearts breaking. And we can’t even hug.

What just happened!?!?

As the days march on, we continue with more appointments – an MRI and a neurology consult.

The neurologist shows us Jasper’s MRI for the first time. It’s abnormal.

“There is white matter on the grey matter. I see lesions on the right and left side and additional spots in the back. Was Jasper premature?”

Jasper Mack was born at home, 42 weeks pregnant. No trauma, typical everything. Big & beautiful. 9.2 lbs of total babe.

“This is deeper then what I would expect with a typical CP child.”

She mentions this could have been caused from a stroke in utero. It could be metabolic or maybe a genetic disorder.

Heads spinning.

She gives us an order for physical therapy, occupational therapy, speech pathology, and a leg brace for the right leg that drags.

“I’m not convinced this is cerebral palsy, I’m not ruling it out though. I want therapy, more testing, and then we’ll have the geneticist see him.”

We leave her office, more confused than when we entered.

After weeks of research, we had almost become used to the idea that Jas has a mild form of CP…even grateful that’s all it was.

We headed directly to the hospital for x-rays of his hips and legs, blood work and urine cultures. Genetic blood tests came a couple weeks later – but results are two months out.

Now we wait.

We’re getting good at patience.

In the mean time, we’re working hard. More importantly, Mack is working hard!

We have therapy sessions four times a week, and the little man is getting used to the new leg brace.

In four short weeks we’ve gone from no unsupported steps and no words, to a lot of new sounds (maybe even words!), some sign language, and walking…as many as 25 steps…on his own!

I LOOOOOVE this guy! With every bit of my heart.

Jasper is almost 17 months old, and as much as I want to hear him say a word – a real word – walk on his own, or use his two cute little fingers to pick up food, I really just want him to keep smiling.

If you’ve met Jas, then you know he can light up a room with his smile. He is the happiest person I know, and that happiness is contagious to anyone in the same room.

With so many unanswered questions and endless unknowns, we are doing our best to live in the present, work with Jasper as much as possible, and remember how lucky we are.

Keep smiling Jasper Mack. We love you to the moon and back.

This is our new normal. Awesome Mack.

Jazzy’s Numero Uno

I think I say this quite a bit, but….

Dang, life moves quick!

The Littlest Dude crossed the numero uno threshold this week.

No teeth, and not walking yet. But the Man Cub eats like a bear! 90th percentile in length needs the fuel.

It was a pretty awesome numero uno b-day party with the extended fam.

Happy birthday Littlest Dude.

A Dude Family Christmas: 2013

3 kids. 1 dog. Countless presents. 1 car.

11 hours up. 13 hours back. 7 days of family holiday chaos.

6 adults. 7 kids (under 10). 1 roof.

Christmas Eve with the Dude’s 97 (yes, 97!) year old Grandfather…and 33 of our closest relatives.

QT with family unseen for years.

Perhaps a tense family moment or two. (No holiday would be complete without them.)

A trip to the local casino for a photo opp next to the fake Christmas tree, indoor waterfall, AND escalator.

A couple Santa sightings.

Homemade Christmas tree ornaments.

Many battle royals.

And Christmas Day full of holiday magic…

[youtube]http://www.youtube.com/watch?v=WmuWgpK3rMA[/youtube]

Safe to say The Dudes enjoyed a pretty rad holiday. Hope y’all did as well.

See you on the other side of 2013.

PS – End of Year lists are all the rage. Here’s a few tasty nuggets…

  1. Best of Art of Manlieness 2013
  2. Best of Brain Pickings 2013
  3. 13 Best Books of 2013 (Brain Pickings)

The Dude Family Tackles “Secrets of Happy Families”

A little known Dude fact: I once attended law school.

Yep, a full year of law school – they say the first is the hardest.

Then I left.

Flunked? Au contraire mon fraire.

Killed it. Dean’s list. Law Review.

But the life of a big city attorney paying off six digit school loans was not very appealing.

Definitely the right decision.

Although I walked, I did retain some benefits. I still dig the law. I have a much better understanding of legal matters. And I can consume a book while highlighting, underlining, and taking notes in the margins.

A skill and a curse. But my legal reading skills came in handy as I soaked up Bruce Feiler’s The Secrets of Happy Families.

I love the idea of “hacking” the family. Finding tips, tricks and secrets to create a happy, fun, organized, always-learning family.

Efficiency? Simplicity? Count me in. 

Here’s a great TED talk from Bruce about the Agile Family. Pretty awesome.

[youtube]http://www.youtube.com/watch?v=J6oMG7u9HGE[/youtube]

I just finished Secrets, and I’m ready send the Dude Family through a test run making the most of the “low hanging fruit.”

Awesome, right?

Mr. Feiler, you are officially on notice. The Dudes are putting your Secrets to the test.

There are 13 chapters. All with good thoughts.

Love the closing lesson: What’s the secret to being a happy family? Try.

But 13 chapters is a lot. And each family is unique. Every secret will not work for every family.

Be creative. Be flexible. And see what works.

We’re choosing a few of our favs and making a run at it.

I definitely recommend the book. However, the proof is in the living. I’ll let ya know how the living goes.

Dude Family Secrets

  1. Family Meeting (Easy to implement, start right away)
    1. Wednesday evening 
    2. Under 20 minutes 
    3. Q’s  
      1. What worked well in our family this week? 
      2. What went wrong in our family this week? 
      3. What will we work on this coming week? 
  2. Self-directed checklists (Easy to implement, start right away)
    1. Morning routine, chores, etc.
    2. Put checklists on whiteboard on the fridge for kids to read and check off 
      1. Add weekly “goals” to whiteboard 
      2. Choosing own punishments and rewards
  3. Family meals (Easy, already doing…continue to have meals together)
  4. Family rituals important (Mid-term, start working on rituals with Mrs. Dude)
    1. Rituals have to be created. We can’t sit back and hope they’ll just happen. We have to go out and make them happen.
    2. Fun, hokey, memorable.
    3. Seasons, holidays, vacation/bonding?
  5. Branding our Family (Mid-term, start working on branding with Mrs. Dude) 
    1. Belief Board – p. 52 
    2. Family mission statement – p. 56 
    3. Puts onto one piece of paper all the words that matter to us – ex. p. 60 
    4. Check Bruce’s “toolkit”
    5. Keep it short?
    6. Make drafting it a special occasion.
    7. Post in a prominent place
    8. 80 example values – p. 65
    9. Value Q’s – p. 67
      1. What words best describe our family?
      2. What is most important to our family?
      3. What are our strengths as a family?
      4. What sayings best capture our family?
  6. The Buck Starts Here
    1. www.FamZoo.com
    2. $ penalties?
    3. Allowance = $1 per week, per year of age?
    4. Chores separate from allowance?
    5. Loans from parents?
      1. Write essays for major purchases?
    6. About understanding constraints
      1. Constraints force creativity
    7. Pay for passions
      1. Accept passions 
      2. Great people are great because they find their passion. 
      3. The goal is not equality; the goal is fairness. 
      4. Focus on what they really need, not how much you’re spending. 
    8. Put them to work 
    9. Part-time jobs are great for kids

A Sweet Dude Family Vaca Highlights My Varied Geographic Past: Y’all vs. You Guys!

The Dudes have just returned from an awesome family vaca at the beach. Eight adults, three kids, and four bedrooms. Yikes!

Awesome family time…

Photo: Even people that live at the beach take a beach vacation. @caseybradshaw #topsailvaca2013

Gorgeous sunrises…

Here comes the sun. #topsailvaca2013

A couple too many margaritas…

Photo: Margarita day...  @alexbradshaw @caseybradshaw #topsailvaca2013

Boat times

Photo: Boat times with Rex. @bradshawtk #topsailvaca2013

And lots of xoxoxo’s…

Photo: Me and my biggest babies. Waaaaahhhhh I want to go back to vacation!!! Best Christmas present ever! #topsailvaca2013

But one of the things I learned on this awesome excursion is that my varied geographic background is still evident in my linguistics. Huh?

Despite that fact that the Dude is a whole-hearted southerner who is not afraid to muscle “y’all” into a conversation or two, my northern roots are still evident when I’m not paying attention.

Mrs. Dude’s “Mimi” asked about my origin based on my natural use of “you guys” as we conversated. Dang, y’all!

Oh well, I’m actually pretty fond of my unique northern linguistic roots…jimmies, bubbler, packie! Heck yeah.

Here’s a pretty awesome review of 22 Maps That Show How Americans Speak English Totally Different from Each Other.

My favs…

  • Y’all vs. You guys
  • It’s a rotary, gosh darn it!
  • Water fountain = bubbler
  • Sneakers, not tennis shoes (although, I do like “go fasters” as a quick hijack from the military)
  • Brew Thrus are my jam!
Let's ignore the East Coast/West Coast split and notice that Wisconsin and Rhode Island call a water fountain a "bubbler."

Hat tip to Fast Company for sharing the love.