Settling Into Life as a Special Needs Family

It’s been a while since we chatted about special needs, the Dudes, and Handsome Mack

No time like the present for a catch-up sesh. We’ve definitely grown – figuratively and literally.

We’re no experts – because no one is – but we are settling into our life as a special needs family.

The shock and awe of the diagnosis, the rapid learning phase, and mobilization of a “team” are behind us – although the ground is always shifting. The true tests are underway – how do we manage our day-to-day?

No small task.

I’ve located a few interesting Mack-related links that share similarities with my perspective of this journey…

I like this open letter from a dad to his non-verbal autistic son. I understand the feels. Sometimes the deeper meaning is right on the surface. “I promise you I will spend my life keeping you safe and making this world better for you.” Hard to get deeper than the natural love from dad to son.

I try to relate to the thoughts in Mack’s head. Not easy. We’re all locked in our own heads, but Mack can’t even attempt to describe. Non-verbal is an interesting quality.

This article attempts to explain what it’s like to be autistic. Decent attempt for someone that isn’t autistic. I really like The Reason I Jump for a glimpse inside an autistic mind. Might be challenging for caregivers, but it sure is hard for the autistic mind too.

Mack turned 7 in January. I feel this mom worried about her non-verbal son that just turned 10. Special needs begin to stand out as you age. School becomes less relevant as the progress gap widens. Support is harder to find as the years add on. Reality can be raw.

The above article is our present – starting to see a vision of the short AND longterm perspectives. This complex life of a mom and her 22-year-old non-verbal son is a glimpse of the future. The challenges coming into view at 7 are real.

Challenges build.

But so does resilience, strength, love, beauty, appreciation…a life lived with a view of a deeper meaning that is hard to find and harder to hold onto.

Siblings live a life touched by special needs as well. Our family – top to bottom – is forever improved by our everyday life. This article sharing the deep relationship between brothers, one disabled and non-verbal, offers an understanding of connections made beyond words. It’s amazing to watch these relationships form with people around Mack – especially his sister and brothers.

Mack seems most at home outside. Especially at the edge of the ocean. He can dodge crashing waves all day. Sun. Wind. Movement. Fresh air. A peace that is difficult to recreate away from the water.

I feel this dad of a son with a “shockingly rare genetic disorder” – also non-verbal – when he explains The Importance of the Family Cottage…

[I]t was also a place where Walker could be who he was, free from the stares and expectations of others. As could the rest of us. The light and the wind seemed to change my son, calm him down

[A] developmental pediatrician revealed how delayed Walker actually was. He told us Walker would never read or drive a car. Then he asked if had any questions. I replied by explaining how Walker changed when we went up there to the island, how he seemed to lift his head toward the light and the breeze in the west and settle. I asked if I would ever be able to explain to Walker how much that place meant to me.

“Not rationally, no,” the doctor replied. “But it sounds as if he already understands it anyway, in his being. You know what the Buddhists say: get out of the way of your own mind. In that way, Walker’s miles ahead of all of us.”

I wonder how much words get in our way? How much thought diverts our attention and delays our true potential?

Huckberry tackled this question in a post I’ve held onto for a while – Active Mind: Thinking Without Words.

They build a strong case for the power of words…

Put simply: the words you know and use are going to affect the way you act. It’s Mom’s famous advice: you are who your friends are; it’s just that your friends happen to be the words you know and use. So the better words you have, the better you can describe and (ostensibly) understand and experience the world.

But, more importantly for this discussion, also the great happiness and peace of no words.

The absence of inner speech does not mean unhappiness, in fact, it may lead to profound joy.

So to complete our question: No, man didn’t think before words, he acted on instinct. But, it wasn’t a horrible existence, and it may have been extremely peaceful.

Knowing there may be profound joy and extreme peace in Mack’s mind makes me happy. 🙂









#4!? Why We Are Growing Our Special Needs Family: Trust Your Gut

Four kids? That’s crazy.

Or is it?

Four kids, and special needs? Definitely crazy.


The addition of #4 has been a topic of discussion for me and The Queen for quite a while. Four kids always seemed like a stretch. Especially when SATB2 was added to the equation.

But every day we grow. What once seemed like a stretch becomes a possibility.

And then a must.

The quiet moments in the wee hours of the morning are my opportunity to sit, breathe and meditate.

At some point in the quiet, I hear the creek of the door as a groggy Mack emerges from sleep.

The boys are early risers.

Mack suspended in the half-wakefulness of breaking slumber. Me suspended in the half-wakefulness of meditation.

We shoot for 8 hugs per day, but the first is always the sweetest.

He sinks into my crossed legs and melts into my lap. The embrace is silent, but deep. A warmth, a love that is hard to put to words.

While the mind is quiet and the world is slow, answers are clear. Your intuition knows. Trust your gut.

Dad is my superpower. The Queen is made to be a Mom. These kids were crafted to support each other. This family was designed to be together.

But we’re not done yet.

The Mrs. summed it up best in the FB announcement…

Are we crazy?! Heck no!

You could ask the internet:

Or you can trust your gut.

We’re going with the gut.

Does special needs play a role in our decision? Of course. Special needs is part of our reality. But it doesn’t define us. It doesn’t limit us. Special needs makes us stronger, more capable, more daring. Embrace every moment, every opportunity.

One more person to love Awesome Mack.

There are no “right” answers. We’re all making it up as we go. Don’t worry about what anyone else thinks. Trust your gut.

The Dudes are growing, and we couldn’t be more excited!

PS – We’re getting a puppy too!!! Yeah, that’s kinda crazy. 🙂

Update: 2.17.18

#4, Baby Boy

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.