Embarrassed

It happened today.

A slight blush shone through his little freckled cheeks and small tears hung in his blue eyes. His head hung a little low, and I knew what was coming.

“Mom, those kids were staring.”

His face couldn’t hide the mixture of embarrassment and self- ashamedness for being embarrassed by his older brother.

This kind of embarrassment only comes with having a stare-worthy brother.

As we parked for our end-of the-year celebratory lunch for Josh, I felt a twinge of angst. My eight-year old asked if we were taking the food home.

“Don’t you want to eat inside? What do you want to do? “I prodded and probed for his true “why” for asking and though he said it was fine to go in, but the truth was the proverbial elephant in the room.

The unspoken. The un-admittable.

Embarrassment.  And shame for being embarrassed.

According to Wikipedia:

Embarrassment is an emotional state of intense discomfort with oneself, experienced upon having a socially unacceptable act or condition witnessed by or revealed to others.

Joshua’s condition is considered socially unacceptable by some.

And though he does not know it, those who love him do.

His brother doesn’t want to feel this way.

But he’s eight. And things are a big deal at eight.

So as I tried to explain that they may just be curious, and even if they weren’t  we need to stand up for Josh and not worry about what others think, and people just don’t know what our lives are like and all the blah, blah, blah…

In my ramblings, I struggled between anger at those boys who were staring and my boy embarrassed about it and myself for feeling it sometimes myself.

I will clearly state that we not embarrassed by Joshua. We are not ashamed of him. Embarrassment creeps in rises up when those who do not understand him make us feel like he is less.

I needed to glimpse into my young son’s heart. As my own heart poured out sympathy and shared his pain so intensely, I felt Joshua’s pain unaware. My soul tore for each for different reasons.

“They think he’s weird. And that might mean they think I’m weird.”

“Well, I’m weird,” I said in some lame attempt to somehow make this whole “thing” better.

Then I told him that we needed to love Josh more than what people thought about him.

My oldest son, who often does with Josh what I cannot, had moments before pulled him out of the booth when he didn’t want to leave , put him in his car seat, then took him out of the van when we arrived home.

As we walked in, my soft-spoken and gentle son said to his youngest brother, “You know, I used to feel that way too.”

And I asked, “What changed your mind?”

He simply stated: “What you said.”

I can’t change people’s minds. I can’t know what they are thinking. I don’t know if they are curious or think my son is weird.

I don’t know if they are whispering prayers of thanksgiving that they don’t have a child like mine.

I could say I don’t care.

But I do.  I hate the stares. I hate them for all of us.

I hate that we look at people through our eyes instead of God’s.

And as I told my son in eight-year old language, “God loves all of us the same. God loves Josh as much as he loves you. God loves the homeless man drunk and smelly on the street as much as he loves the man who lives in a mansion.  We should all love each other like that. But unfortunately, people don’t.”

Later, we talked a little more and I asked him if he felt bad for being embarrassed and he said he was. Because he loves his brother.

But he said that people think Josh is stupid and they might think he’s stupid.

“So what can we do about it?” I asked.

I can love my son more than what people think about him.

Is that enough?

And what can we do about it?

 

Aware

Today is Autism Awareness Day.  A day I never thought I’d be writing about, let alone living.

We are aware of autism every day.

While pregnant with Joshua and learning his diagnosis of Down syndrome, I developed a sinus infection induced by crying.   The doctor reassured me, “Down syndrome is the ‘Cadillac of disabilities’. I’d much rather have that than autism.”

Just as I was getting used to my Down-syndrome-may-not-be so-bad life, it reared its head – The Scarlet “A”.

There is no prenatal test. No blood test. Not even a really definitive test.

Not like with Down syndrome in which chromosomes glare black and white declaring disability.

Autism sneaks in and overtakes without warning. I did not see autism coming.

I never knew autism could co-exist with Down syndrome.

“Josh is way too affectionate to have autism. He smiles and hugs and looks me in the eye.”

An unscrupulous thief crept into my life and robbed me of all the possibilities I was told could be for my son with Down syndrome.

My heart broke bit by bit as I listened for newly-babbled new words which had faded into non-existence.

Hard-earned skills exchanged for obsessive and destructive behavior.

Play drifted away and excessive video-watching became the only interest.

The gap between milestones reached by his peers with DS widened and soon the chasm became too obvious to ignore.

I wanted the diagnosis to prove I was not in denial about Josh’s limitations.

A dual-diagnosis brought relief.

Relief that my son was not “just low-functioning”, but had something else “wrong”. That it was not that I had just not done enough.

Because I thought “enough” -enough therapy, enough hard work – all those things I was told would be “enough” – would make this helpless little baby reach his full potential.  After all, that is what we are all told. With the proper resources and opportunity, people with Down syndrome can be contributing members of society.

So I hunkered down and did it all – therapies and specialists, meetings and workshops. I reluctantly put my baby in school at the ripe old age of three and waited. I waited for it and all the experts to make it “work”.

During this time, I had another baby and wondered if this contributed to Josh’s regression. Others seemed to have more time to devote to their special needs child, yet I couldn’t seem to “do it all” with four children under eight.

Accolades to the moms whose children did so well cut me to the core, as I couldn’t keep up.

Slowly, the little boy with Down syndrome drifted into a little boy with no words and upsetting meltdowns, overturning tables and biting classmates.

My precious little boy once praised and adored by his teachers became a problem.

My quest to find answers was met with opposition and seeming futility until at last it came.

The diagnosis of autism simultaneously comforted and terrified me.

My dreams shattered yet again as I grieved again for the son I thought I would have and the black hole deep in my heart grew until everything became clouded by a disability lens.

Wondering how my son could ever fit into this world where achievement rules, ability is applauded and being the brightest and the best is the goal.

Nothing seemed to apply to Joshua.

No sermon preached. No Bible verses studied. No meeting attended. No one seemed to have my “problem’.

My different kind of normal was again challenged. I felt alone in my noisy house-full.

I was afraid to tell my friends within the Down syndrome community that I prayed for Joshua to be healed. I feared judgment and criticism for not accepting him. Or worse – that I didn’t love him.

But my heart ached because of my intense love for him. My mother’s love, fierce and protective – burning against those who were deeming him a difficult child and raging against those who looked down upon him.

Offended at those who thought he needed to be healed and angry at myself for wanting him to be.

And not strong enough to live this kind of existence without help from God.  I had cried to the Lord upon his diagnosis of Down syndrome and a severe heart defect, “God, I can do one, but both?? I am not strong enough for this!”

The wonderful thing is that I don’t have to be.  When I am weak, He is strong.

God has allowed the different than what I ever expected and yet, He has shown me that I have been given a great honor in being Joshua’s mommy.

And that jealousy and comparison have no place. I need not compare him to anyone.

And as I continue to pray and ask for God to help me bring up this lovely creation He made in His image, I am reminded that He is my strength.

I am reminded that all feelings of failure and defeat are not of God, but as I lean not unto my own understanding, I find a path.

A path often rocky and dirty yet cleared by His grace little by little to guide me each step of the way as I muddle through this journey.

And while I am aware every day of autism, I am also aware that every day has new mercies, new opportunities and a new awareness of things wonderful and to be celebrated.

Lord, help me to live aware. Aware of all the wonderfulness that is life.

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To Those Who Use the “R” Word

Today is the Spread the Word to End the Word day. A day of awareness to end the use of the “R” word” retarded, retard and any other forms of such, like ‘tard’.  A day recognized as a day for change.

But I and many others live this day every day fighting against the use of a word.

A word once used as a diagnosis is now used as a term of insult and mocking.

No place is sacred.  Not stores or schools or even church. Corridors and walls echo “That’s retarded “, “I’m so retarded,”  “You look like a retard,” and the list goes on. The word invokes such creativity is seems.

From “My hair looks retarded,” (Statements like these are so grammatically incorrect and frankly ridiculous I won’t even waste my time to comment) to a Facebook meme referring to laughing like a retarded seal.

Just how is the seal retarded?  He flaps his hands, like one with autism.  Is that what is funny? Is this what makes the seal “retarded”?

I ashamedly and reluctantly admit I used to use the word before it became personal.

And I don’t really recall my thought processes as I so flippantly berated myself by mumbling, “I’m so retarded.”

How I wish someone had asked the questions so I would have realized how hurtful it was.

So I ask you who continue to use the word: What makes something “retarded”?

What makes someone or something sound “retarded”?  Is it noises like those who cannot speak make?

My son makes that “retarded” noise when he opens his mouth and has so much in him to say but only a grunt will come out.

And I often tear up because he wants to speak so badly and I see the frustration swimming in the pools of his blue almond-eyes.

He acts “retarded” with his obsessive towel-twirling and uncoordinated movements and not being able to use the toilet on his own while having to rely on others to change his large pull-up type pants exposing him in ways that would  mortify a typical almost-12 year-old.

But he cannot express his embarrassment. He must deal with it because we have to change him. He cannot tell me when he’s sick, or sad, or just plain in a bad mood.

He’s developmentally delayed.

Retarded.

Do you see my son when you say it?

Or do you see a young man in a wheelchair with his head slumped over with drool seeping from his mouth?

Do you see a little girl with almond-shaped eyes whose tongue might hang out a little when she gets tired?

Or do you see a teenager who talks a little like he has marbles in his mouth and is hard to understand?

Do you see an adult with her caregiver in Walmart who runs up to give you a hug?

Do you see my son when you say it?

I see my son when you say it.

And it breaks my heart.

Because I see a smile that can reduce me to a sobbing mess because the soul behind it is so pure.

Because I feel a chubby hand in mine and on my face and I hear a belly-laugh from a boy who sees angels.

You – the one who still uses the word: Do you realize that it cuts so incredibly deep because I know there is an unspoken idea that maybe you are so thankful you don’t have a “retarded” child?

Or think it will never happen to you.

I sure didn’t.

What about you who are politely asked to stop and yet simply refuse?  Who tell me or my kids it’s just what you say and you aren’t going to stop?

Do you think I’m too sensitive?

What about you who tell me that I am and that it’s just what “everyone” says.

And that it’s not aimed at my son.

Does the “N” word offend you?  It does me.

But if it’s not aimed at you or one of yours or even one of my friends, should it be okay?

Hardly.

We are to speak life and not death.

The “R” word speaks death because my heart dies a little every time I hear it used by someone in the halls of my church who I know also loves my son.

Death every time my children have to hear friends use it and being mocked for standing up against it.

Would Jesus say “retarded”?

Would He fight so hard for His “freedom of speech” and right to say it?

He came to heal the brokenhearted. He spoke life and love and honor.

The “R” word speaks death and hate and disrespect.

Yet I’ve been told so much to the contrary.

I’ve been told that because the word simply means “slow” I shouldn’t be upset by it.

But is that really what someone means when by using the word?  What image do you see?

I see my son who would smile and touch your hand even if you called him that vile, horrid word to his face.

Maybe he’s too “retarded” to know better.

Maybe He is like Jesus and forgives them because they know not what they do.

Maybe he knows his mommy will not stop speaking out for him because he cannot.

What do you see when you say it?

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Heart Sleeves

I have often heard that special-needs parenting requires a thick skin. However, this mama’s skin feels pretty thin much of the time.

My own momma used to tell me that I “wear my heart on my sleeve.”

So my exposed heart gets hurt and the skin under my heart-covered sleeve is fragile.

And I become weary.

Weary of the continuous fight. Education, services, therapies, specialists, doctors and the gamut of who and what is needed to simply sustain “special-needs life” overwhelms me at times.

My child, who cannot speak, possessing the cognitive skills of a toddler encased in a pre-pubescent body, often expresses his frustration through unexpected meltdowns and constant, loud stimming (self-stimulating behavior).

Learning a simple skill require constant repetition.

Nothing comes easy for him.

Heart defects and respiratory problems loom in the back of my mind as well as the risks of certain diseases more common in a child like mine.

I’m a guard keeping constant watch over a delicate, yet mighty fortress which is Joshua.

Other parents deal with similar issues. Some less. Some more.

Many watch helplessly as their child suffers from multiple seizures daily. Others cannot leave their home because of health or behavioral problems.

Others practically live in a hospital, as I did for several years. Surgeries become commonplace.

Others change feeding tubes, haul wheelchairs in and out of vans and struggle to get through doors while onlookers do just that. Look.

Penetrating stares and flippant remarks seem acceptable and even appropriate.

Name-calling and jokes are merely a Facebook newsfeed, doctor’s office and grocery store aisle away.

“Sit down! What are you, RETARDED??” yells a father at his running children as my husband sits waiting for an appointment.

“You know, I have the opposite problem. All three of my children are highly gifted,” boasts a mom as I push Joshua on a swing.

“You do know he’s sucking his toes, “says a woman disapprovingly to my friend.

“You must ride the short bus,” says a guy, driving an airport shuttle, to my friend whose son also has Down syndrome.

“There’s no such thing as ADHD. That’s just something lazy parents make up because they don’t want to discipline their children,” says a mother who is blessed to have children with no such issues.

We deal with insensitive bedside manner and quietly nod as doctors and specialists give their “expert” opinions.

“You know he will be moderately to severely mentally-retarded. You may want to reconsider terminating your pregnancy because you are so devastated,” says the obstetrician. To me.

“Your son is too profoundly mentally retarded to go to that school, “says a specialist. Again, to me.

Facebook pages dedicated to using people with Down syndrome for target practice.

Memes calling people retarded, tards, retards, potatoes.  And my friends “liking” them.

Look at my heart. On my sleeve, wet with tears for my precious boy and all those like him who would simply hug and smile at someone who called them that or posted that picture.

I have cried to the Lord in my most raw, real moments before Him that he picked the wrong person to do all this. Because I don’t have the stamina, the fortitude to withstand all that goes with this journey.

But God doesn’t make mistakes. He chose Joshua for me.

His life is worth every single hard thing I must do.

Or hear. Or read. Or even ignore.

God’s grace enables me to turn the other cheek when I want to scream, “YOU DON’T LIVE MY LIFE!!!”

He has entrusted me with much.

Often the most difficult is not what I must do for him, but what I have to hear about him.

But hurtful comments and careless words are no match for his smile.

And I realize that I am able because His power is made perfect in weakness.

And while my heart my lay open for all to see, I know Who holds it. And as long as it beats, it will always be vulnerable as not to harden to the harshness of this world, but to soften the hearts of those around me.