Down Syndrome from a Mother's View

The following is a post by my Mother. As many of you already know, I have a brother with Down Syndrome. I asked her to write about him and I am so glad she did. My mother is an amazing writer and her honesty is commendable and inspiring. Enjoy....


What does Down syndrome mean to me? It’s being shockingly pregnant at 42. It’s never doing the testing – it wouldn’t have mattered. It’s the unacceptable silence at birth. “Paul, is the baby okay?”

“Yes, he’s perfect.” Why did I not recognize this foreshadowing?

“Have you ever heard of Down syndrome? I think your baby has it.” The doctor moves away from me. I am alone.

It’s the sledgehammer effect. They present the worst case scenario. They offer to take this child away. Then comes the parade of professionals (I credit the term to my friend, Paula Collins, the mother of a Down syndrome child, Tucker, born five days before Mark). A blur of faces. A table full of brochures, information…overwhelming. I dig in. I move on. I present the best face I possibly can to my children, Jeffery, 27, Adriana, age 13 and Sammy, age 7. The baby is no different than these others to me. Simple as that. But, what the future holds (I don’t even know anyone disabled!), is much more complicated.

Paul is devastated, too. We are moving in a blurry surreal world. The air is thick with the shock of it. We can’t possibly be in this place. Our relationship has not been on steady ground. But here we are.

We start Early Intervention. I begin to manipulate and try to mold his little body to do the things it will need to do in this life. He needs to be stronger because his muscles are weaker. I cannot sling him on my hip as I did with my other children; he must be held side saddle in front of me to prevent pelvic spread. He has weak respiratory – he’s hospitalized three times for pneumonia – once on Christmas Eve. He scoots in the strangest manner. He walks at 27 months. We cherish the milestone. I potty train him for about a decade. He gets it. Regresses if emotionally upset. There can be no conflict, no upset in our life. Try keeping things always on an even keel. Try doing that through a fairly hostile separation. Try doing that with a now 13-year old rebellious, in-your-face teenager in the home.
 

That magic number 13 has appeared again. Now it’s Mark. Yes, he is rebellious, independent, and sometimes “in-your-face.” He’s also the greatest, most fantastic kid ever. He is a born musician. He plays his guitar morning, noon, and night. He loves Dispatch and Creedence and Neil Diamond. He rips on his Djembe drum like the guys at the Respite Center taught him. A friend, Rhonda Matson, allows him to play backup drum for her at Open Mic night, and he performs on the bongos with the high school chorus. He listens to youtube and has his own facebook page. He doesn’t like school work, but he does okay. Occasional and sometimes random behavior issues.

He goes to the Respite Center. A place beyond mere human words. A decade of going there has helped Mark to grow, to socialize, to learn. I meet others with a wide range of disabilities. I meet the parents. I find myself at the funeral of one of these children and it is so very, incredibly sad. I look around and think how lucky I am to be in the presence of such great people. How did God find me so deserving of this great gift?

Mark goes to Special Olympics. He loves it. It is as much social as it is athletic. I gather with the special parents and we talk about stuff that is important to us. Gone are the days when I fit in with the other mothers. I’m old now and my son has Down syndrome. The landscape, the communication has changed. At the meets, we parents cheer the other team (almost) as loud as we cheer on our own. You would never see a fight in the bleachers or a foul word being slung.

Not always so in the neighborhood. Sometimes there are little spats between the neighborhood boys, but just like any other kids, they make up and move on. They fly down the street on their scooters. The playing field is leveled. I can hardly believe my eyes (and I couldn’t look at first, not wanting to see him hurt and afraid, too, that I would somehow jinx him) when I see him flying down with such grand ability. That’s my boy! The one they offered to take away… The one a little test and a little procedure would have taken away. The one I have been blessed with.

Oh, and the foreshadowing? It was absolutely accurate. I wouldn’t change a thing. He’s perfect.



Thank you so much Mom for sharing this with my readers. I love you!!

Ranting about Retard

I am getting pretty sick of hearing people throw round the word "Retard" like its nothing. I'm a little confused here. Isn't this word when used in any non medical tone just as degrading as, oh I dunno, The "N" word. How about the 'F" word? It is considered socially unacceptable to throw around these angry,hateful words but Retard? Eh, that's nothing. I don't get it. Teach me.



Better yet explain to this "retard" why you are using the medical term for his condition as a hate word.
Go ahead. Tell him why you feel it is okay to take a word that describes him, back it with your bitterness and anger, and throw it around casually.

Personally, I feel discrimination doesn't come from the actual word but the tone in which it is being used. So, let us go ahead and say someone cuts you off in traffic and you decide to deem them a "retard". Hmmm, well you are implying he is an incompetent, Ahole who cant do anything right. Using the word retard has now turned you into a bully. A socially irresponsible one at that. Way to go. I'd rather be a retarded all day long than be a bully.


Why don't you say it to his face? Yes, him. My brother. He is in fact mentally retarded. He is also insanely compassionate, empathetic and most importantly not devoid of human emotion so when you use the "R" word it hits him where it hurts. He is sensitive to the fact that he "different from the other kid" He knows. He doesn't need that shoved in his face or pointed out. Using the word "retarded" is meant to imply that that's a bad thing. and for him? and all of us that love him? It's not a bad thing. It's a challenge and an obstacle but everyday he wakes ready to attack it with ferocity. By using that word you cut him down and chip away at his self esteem.

Ask an adult with Down Syndrome if they have ever been called retarded. Ask them how it felt. The same way it feels when a chubby girl gets call "fat" or when a young gay man is called a "fagot". It stings. Bad. No one wants to be labeled. No one wants to be boxed in by the color of their skin, their weight, their religion, and certainly not by their IQ level. 

Bottom line, TREAT OTHERS THE WAY YOU WANT TO BE TREATED. We have no right to refer to anyone who is in a different station than we are by anything other than their name.

Adventures in Babysitting

Today I am babysitting my lil bro Mark. Mark can be a bit quirky. Some of those quirks include enjoying cleaning...especially vacuuming or VacAVOOOming as he pronounces it. Another quirk? He rearranges furniture in his spare time.

Ya.

So.


I am feeding the baby and sippin coffee and what not and I'm all "ohhh heeeey, Mark! Whatcha doin????"

and from the stairwell I get a "Nutin Sissa....just playing all by myself"

errr, okay.

20 minutes later "The summer of '69" is blaring for it's 7th time in a row and I decide I should take a look see.

I find this:






That my dear friends, is my brothers box spring and mattress in the middle of my father's living room.
Who does that?
The kid dragged his entire bed into the living room and then neatly made it.
Then a few hours later when I made him put it back he acted like it was waaayyy too heavy.
Ha!

It takes all kinds!

Growing Pains.

Then

When I first found out my brother has Down Syndrome it was such a shock. Fear and negativity really took hold. Although it didn't last long those moments were pretty hellish which is almost laughable at this point because he is so vibrant, sweet, and loving. I could never imagine Mark being any different than he is. I wouldn't want to change him if I could.

On Thursday I turned the corner onto my Parents' street and made my way to the blue style ranch and as I creeped along, baby asleep in the car, the radio playing THIS, all of a sudden Mark and his two friends came speeding out from a side yard. The two others on a bike and a skateboard and Mark zooming down on his razor scooter.

He was flying. I mean really flying and for a moment the music synced up with his movements. Have you ever had that happen? When the windshield wipers of your car or the fellow biking down the street all of a sudden glide seamlessly with the beat and it feels like life is orchestrating it's own soundtrack?

Watching him be so independent and agile and healthy and fast and free and all those things that everyone said he would never be was mind blowing.

It's amazing how many stereotypes can be smashed to smithereens by a kid with a pair of almond shaped eyes on a scooter on our little dead end at dusk, no?

It's not always the big stories, the news worthy tales, or the award winning moments . I'm a firm believer that the actions most worthy of accolades and honor are a lot harder to see. Not as obvious or bold. They leak in through key holes and sneak in back doors.12 year old boys can redefine words like pride and gratification just by being themselves. Simply by coasting along on a couple of rickety wheels on a short street in a small town.

Then

It is a bittersweet thing to realize that your baby brother is no longer a baby. DS is kind of like a youth preserver in a sense. Mark has been so young for so long and now? He is so full of these teenager traits. Talking about IPOD touches, going to concerts, and throwing around pre-teen attitude. He cooks dinner on taco night Tuesdays, helps change diapers, and teaches Hendrix how to open and close, open and close, his shape sorter box.  He goes by "Uncle Mark", there are about twenty gold medals lining his bedroom wall, and I'm pretty sure he has a crush on Miley Cyrus. Although, he would never admit it to me.

Then

The kid who was never supposed to grow up is all grown up.

Now

When I parked the car that day, Mark came sliding up next to me.
"Need some help?" he asked
"Can you carry in some groceries?"
"Sure, but I don't got alotta time. Friends are waiting for me"

and in came those groceries and off he went smacking a kiss on Henry's cheek and slamming the door behind him.
Just a kid and his neighborhood friends. Wind whipping in their faces, yelling and hollering, disrupting quiet dinners as they set off each dog barking, once house after another. Trampling rose bushes and hanging in backyard forts.

Now

My family never doubted Mark. In the beginning the focus shifted so quickly from what he wouldn't be able to accomplish to how and when he will. Even so,I just always sort of assumed that there would be this big gap between his childhood and mine. That they would look and feel so different because of the DS but truth be told he is just like all the other neighborhood kids. There is that tell tale look in his hazel eyes and the cute lil pudge on the back of his neck but his friends don't seem to notice all that much or if they do, they certainly don't care.

I don't  know how to say this but basically, I'm kind of blown away by how "average" his life is. He is just another kid scraping knees and climbing trees.

I could not be more proud.

That's the thing about these kids. For a syndrome that appears to be so figured out, they sure are unpredictable. Time lines and guidelines. Reference books and studies. Not one of them can sum up what they can do.



Just when you think the movement has stopped or their growth has stunted, they hop on a scooter and take off, leaving you in the dust.

.

Almond Shaped Eyes: A Lesson in Love

Before I was a mother I was many things.

A collector of vintage garments. A connoisseur of expensive footwear. An organizer of junk drawers. A library book smeller and a yard saler. A coupon cutter and a daily bubble bath taker. A fashionista and a cosmo drinker. A friend and a foe. A daughter, an aunt, a wife.




In our lives we expand until we could practically explode from the many shapes and forms we take. Changing and growing and always rolling along, adding to our list of undertakings and belongings and hobbies and personalities. Some we are more proud of than others. Some lead us to next. Some teach us and prepare us for our future, for taking on yet another hat to wear or burden to bear. They shape our subconscious that later guides us to make life decisions.

While they may have led me to the right path, none of these things could truly prepare me for the insane journey that is parenthood.





So what did prepare me?

I am a sister.

To three lovely brothers.

One who has Down syndrome.

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