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]

Related imageFull post featured on The Mighty. 

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.

The Gifts of Disability: Making Sense of SATB2 [Featured on The Mighty]

fam-picSome roads we choose and some roads choose us.

The road less traveled can be challenging. But it also offers great opportunity.

I recently discussed our new path with Awesome Mack :

Definitely a road with few travelers.

Making sense of this new reality is no small task. Missed expectations can be a bitch. Your vision moves one way, but reality jolts another.

Attachment to those missed expectations is a disservice. To you AND the new reality.

Disabilities don’t meet expectations. Screw expectations. Find the gifts.

Mack is not what we expected. He’s exactly what we need.

Embrace the rare. Be patient. Maintain perspective. Pay attention to NOW.

One of our methods to embrace our new reality is to talk about it. We want to draw attention to SATB2. We want to share with parents that may be on a similar path. We need to process the thoughts swirling in our heads.

In addition to firing words at the page here on DKB, we’ve also been selected to contribute to The Mighty – a great special needs blog that boasts the tag lines:

“Real People. Real Stories. We face disability, disease, and mental illness together.”  

And has a mere 125 MILLION readers.

Sweet, right? Yeah, we’re excited too.

You can find our first contribution here:

Speechless: The Uncharted Territory of SATB2 Syndrome

Jasper Mack

Jasper Mack

“Be the expert.”

A platitude I’ve echoed in my head as I venture into uncharted territory.

My general lack of direction over the years has created ample opportunity for this self-talk.

But I’ve never qualified as an expert. Always onto the next horizon before my “10,000 hours” arrived.

Then I became a dad.

The fit was precise. Love, purpose, direction – the missing ingredients I never knew were missing.

The search for meaning (conscious or unconscious) was over. I knew my path to 10,000 hours – be the best dad I could be.

I didn’t really need to be an “expert.” I just needed passion.

Until now.

When actual experts confirm that I am the expert – not by choice, but by necessity – the implications are profound.


Almost two and a half years ago, The Mrs. and I shared an update about Awesome Mack – developmental milestones had been missed and the search was on for a cause behind those missing milestones.

That search has led us down a path with developmental specialists, neurologists, geneticists, dental exams, ex-rays, MRI’s, sight tests, hearing tests, PT, OT, speech therapy, blood tests, genetic tests …and ultimately THE ANSWER.

SATB2 Syndrome.

Never heard of it? You’re not alone.

Mack was the 53rd diagnosed case of this genetic syndrome – in the world!

But the numbers are growing. We see new members added to the FaceBook support group on a regular basis. Genetic tests are improving, and SATB2 is making waves (ripples?) in the genetic community.

What may have once been categorized as Autism (Mack was almost diagnosed), may have deeper genetic meaning.

Public Service Announcement: If you know a child – perhaps diagnosed with autism? – with no speech and some crazy teeth, a genetic test is probably worthwhile.

What to do with a SATB2 diagnosis?

Become the expert.

With so few diagnosed cases, the parents are the experts. We are the living lab. The doctors defer to the parents.

To begin, we have become very good at expounding the SATB2 highlights:

  • A de novo (anew – not passed down from parents) genetic syndrome that alters the SATB2 gene.
  • SATB2 gene regulates other genes. As a result, altering the SATB2 gene can alter other genes.
  • There are three ways the gene can be altered – deletions, duplications and mutations (“misspellings” within the gene).
  • A Dr. in Arkansas is currently compiling a study of the known cases.
  • There are commonalities among the diagnosed cases, but the sample size is small and much research is needed…assuming the medical community stays interested and funding materializes.
    • Nonprofit? Another topic for another time.
  • Common characteristics: developmental delay, speech delay, dental abnormalities, behavior abnormalities.
    • A common theme but a wide spectrum.


It feels cold to discuss statistics, characteristics, and cases. But that’s what experts do, and that’s the world we’ve been thrown into.

A technical mindset is a must to navigate the medical, educational and financial aspects of a lifelong march into uncharted territory. We need to work within large, established bureaucracies, and we need to fight for our needs. We need to speak their language. We need to be the expert.

But that technical mindset doesn’t change the fact that this group paving the way into uncharted territory is full of children, parents, sisters, brothers, aunts, uncles, Grandparents, and friends. People.

We’re not just cases and numbers lumped into studies. We are the experts, but we are also the emotions that lie beneath the surface. Our determination creates a suit of armor difficult to penetrate, but our love for those we fight for keeps us vulnerable.

A paradox that can be difficult to manage.

Finding the SATB2 answer has removed a small piece of hope – hope that things could all of the sudden be “normal.” Perhaps hope is overrated.

More important than hope, knowledge gives us the will to fight for what we believe in. The determination to overcome the odds. The courage to march into uncharted territory.

The strength to be the expert.

Where does Jasper Mack fall into all of this? Speechless.

  • Mack has a “misspelling.”
    • Because there are a lot of chromosomes that could be “misspelled” and there are so few cases, Mack is literally the only known case with his specific diagnosis.
  • MRI at 1 year showed abnormal white matter on his gray matter. MRI at 2 years showed no change. No regression – great. But why abnormal…who knows?
    • A few other cases show abnormal MRIs, but not all. No conclusions.
  • The Mack Attack is full of love. His “behavior abnormality” seems to be overly happy and friendly. Always smiling. Loves hugs.
    • Although he does have his breakdowns, and other experts (IE parents) have indicated that frustration seems to build with age – one theory is the lack of speech/communication aggravates…seems sensible.
  • Jazzy Mack has no speech. Sounds, but no words. We’ve been working on signs (and speech) for almost two years, and he is only consistent with a few. We are also in the process of being approved (add insurance to our list of expertise) for a communication device – a board with pictures for Mack to choose from.
    • We are told that his receptive language is higher than we may know. We believe this to be true, but with little communication, it can be hard to tell what “sinks in.”
  • Mackie Mack has decent gross and fine coordination, but not perfect. A lot of PT and OT has improved but not corrected this. The work continues. In the end, it could be neurological, but who knows?
  • The Boy eats like a champ and is almost as tall as his bro 2.5 years older, but he’s thin and does not gain weight easily.
  • Mack has 4-5 days of therapies per week – speech, PT, OT, and he has a full-time aide with him for three days of preschool.
  • Progress is being made every day. It may be slow, but it’s progress.

We may not seem like experts. We may not act like experts. But when it comes to SATB2, we are the undisputed experts. And our expertise is growing daily.

Why us? Why Mack?

Natural questions, but not worth the energy. No one has the answer, and the answer doesn’t matter.

This is our world. This is our fight. This is our Mack.

Our family is exactly the way it should be. Mack is exactly who he should be and exactly where he should be. We are stronger, better people because of Mack.

I relish the opportunity to be the expert that I need to be.


Update: Mom & Dad interview…

PS – It’s funny how life gives you what you need when you need it. Coincidence? Synchronicity?

While you wrestle with that conundrum, check out the trailer for an ABC show called Speechless. A great view of being the expert. We can relate…