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The Language We Learn As Parents Of Children With Special Needs

A sweet friend of mine cracked a joke last week that got me thinking.

She is from the South and lives in Southern California. When asked by a multilingual world traveler, she shared that she also speaks more than one language – English and “Southern”. (I love this by the way…my grandma was from the South and God has blessed me with two friends that have accents and sayings almost identical to hers.)

She is not wrong. When you move to a new area of the country, or especially abroad, there is a cultural dialect that must be learned, far beyond just the basic function of the language. For instance, when you are from the South, you just know what “that dog don’t hunt” and “she ain’t worth the salt in her bread” mean.

Parenting a child with special needs is like learning a whole new language. A look at The Language We Learn As Parents Of Children With Special Needs

Likewise, I realize I am  learning an entirely new cultural dialect when it comes to my boys.

The reality is, I don’t like this one as much. In fact, there are many parts of this new foreign language requirement that bring me to tears, make me angry, or inspire me to me want to give up and take a nap.

Let’s start with just the acronyms

ASD (autism spectrum disorder)

ADD (attention deficit disorder)

ADHD (attention deficit hyperactivity disorder)

ODD (oppositional defiance disorder)

LD – Learning Disorder

PDD – NOS (Pervasive Developmental Disorder – Not Otherwise Specified)

ABT (Applied Behavioral Therapy)

CBT (Cognitive Behavioral Therapy)

OT (Occupational Therapy)

PT (Physical Therapy)

ST (Speech Therapy)

SLP (Speech and Language Pathology or Pathologist)

NT (Neuro-Typical)

BP (bipolar disorder)

IEP (Individualized Education Plan)

SPD (Sensory Processing Disorder)

2E (Twice Exceptional meaning highly gifted, but also has another diagnosis)

 

Then there are these words, that I might have known before, but never, ever thought I would use this much or in so many ways

Rigid Thinking

Sensory Issue

Assessment

Early Onset

Spectrum (I am so tired of this one…over used and not understood)

Dyslexia

Dysgraphia

Dyscalculia

Educational Therapist

“Special” followed by anything

Proprioceptive Exercises

Vestibular Function

Executive Function

Social Function

Least Restrictive Environment

Meltdown

Regional Center

Asynchronous Function/Development

Sensory Modulation Dysfunction

Inpatient Treatment

Intensive Outpatient Program

Residential Care

Sensory Discrimination Dysfunction

Becoming Bilingual: The Language We Learn As Parents Of Children With Special Needs

Some of know exactly what this list means.

In fact, you could probably add many more that I have yet to be exposed to as I learn this new part of the world.

Some of you have no idea what any of them mean, and that’s good. You shouldn’t (although maybe have a little grace for us when we can’t put two sentences together, or even worse, when we talk incessantly about anything not listed above just because we can…).

On one hand, I think as moms, we are always learning one new dialect or another.

When we’re pregnant, we start to speak of gestation, and fetal development, of birthing methods and trimesters, as if they have always been an easy part of our vocabulary. Then it’s on to breast feeding, and rectal temps, and anything having to do with sleeping through the night. We speak of milestones and child development along with remedies for rashes, fevers, and earaches as if we were trained by medical professionals.

And, when our babies start to grow up, we begin to learn the dialects that matter to them.

Every mom I know has one. It’s skateboarding and Minecraft and every single American Girl Doll and those crazy Rainbow Loom Bracelets. We learn what we need to learn to relate our kids.

I would like to say that this is like that.

But it’s just not.

It’s heavier. It’s scarier.

It requires more of me than I have ever had to deal with in my lifetime.

Parents Of Children With Special Needs

There are times where adding one more new word to this list feels like adding a weight to an already over-packed, way too heavy backpack – a backpack that I have to carry while dragging my sons with me up a very steep hill.

Yet, at the end of the day, learning this new vocabulary has also taught me so much more about the deeper meaning of other words – words like grace, love, family, redemption and salvation.

Without this new dialect, I wouldn’t know the amazing way that friends can sweep in and make things better, just because they are there. Or how good it feels to have my son hug me, even though he doesn’t naturally enjoy physical touch and affection. I wouldn’t know the sweet joy of my little one being able to finally read out loud.  I never would’ve seen the strength and love of my husband, so raw and exposed.

There is a beautiful cadence hidden in this language.

Once you get past the harsh sounding words, what’s hidden in it is a softness that I have never been able to speak before.

There is another word I need to add to this dialect, to this vocabulary list that I am studying.
Grateful.

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11 Comments

  1. I love your blog, even though I don’t have any kids myself (just one in a bunch of not-so-normal-siblings). But really – it so often leaves me loving Jesus even more. Thank you! 🙂

    1. Oh Miriam, thank you so much for your kind and encouraging words! I am so grateful.
      Love,
      Shawna

  2. Just when I got used to DS meaning “dear son,” my youngest daughter was born with her extra chromosome and I had to get used to DS meaning Down Syndrome.

    1. That is a GREAT example. Oh my goodness.
      Praying for you and your little ones this morning, April.
      Love,
      Shawna

  3. And one we are now learning about, OCD.

    Thanks for your thoughts & for being visible online. You’re posts are always comforting.

    1. Oh yes, Rebecca. Although that is not on our list, I know many moms are sharing your journey.
      I truly appreciate your kind words.
      S

  4. Michelle Brownell says:

    Shawna, your words are a soothing balm to a weary mom’s soul. Thank you 🙂

    1. I really appreciate your taking the time to comment, Michelle. Thank you for your sweet words.

  5. Heather Boesch-Wages says:

    Yes. Yes. Yes xoxo

  6. The worst words we had to learn were the awful ones my daughter learned from the other patients while in residential care. She can’t unlearn those words, attitudes, and concepts. Our daughter will never be the same innocent little girl. If you have a choice, think and pray very hard about putting your child in the hospital. If we had only known.

    1. Oh Lisa. I am so sorry. And yes, our experience with hospitalization was exactly the same the first time around. It was so traumatic.

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