Monday, September 12, 2011

The Acceptance of Love..Part Three

To generalize is human nature. We are constantly making assumptions and categorizing the people around us, trying to figure out where we all fit in. This is what we do, and often without thinking about it.
When it comes to having a child with special needs the generalizations start from day one. Your child is diagnosed with "A" so he will most likely be able to do A B and C but probably not D and E.
I hear generalizations so often that i start to wonder how words like, lazy, over eater, heart condition, low functioning, high functioning, tongue thrust, mental retardation, slow, low tone, happy, social, overweight and on and on, do not not just eat me alive. Seriously i wonder how it is that these words do not all just form together to create this huge generalization monster and eat me up. I feel like these statements, these generalizations wear me down and sit on my shoulders all day. What is so hard about them is they have medical and scientific evidence to back them up, well some of them do. Then these generalizations become statistics and then it is ok to generalize about your child because there is statistic to back it up. This is basic science, right? Could you imagine if this was your baby. Lets pretend that the medical world has made a new discovery that children with brown hair and blue eyes are more aggressive. So you have just given birth to a beautiful baby boy and the doctor walks over to you and says " your son is beautiful, but i need you to know that it looks like he may have brown hair and blue eyes,here is some pamphlets on aggression and a social worker will be in shortly to speak with you". You look down at your little one and you can't see the striking beauty of the brown hair and blue eyes anymore , you can't swim in the pools of blue looking up at you, all you can do is worry. How will he go to school, what about college, will he ever marry? Your moment was taken away, all because of a generalization.You cant look at his blue eyes and brown hair an not associate it with his future, and to top it off everyone else will see his physical appearance and associate it with aggression. Welcome to this world little one you are now a statistic.
Hashem has created this world with a fine brush. His creativity is beyond our greatest imagination. Each being fits into our world as an individual. We look at little ones like my Rozie and see her beautifully slanted eyes and generalize. It is what we do it is human nature.
Rozie has gotten to the age where she will no longer sit in the grocery cart seat. She can wiggle out of the strap and stand up in the seat, and usually this happens when i turn to grab a bag of lettuce or a bottle of milk. To fix this is started putting her in the large part of the basket, i feel she is safer there because she can stand all she wants and and she is not taller then the basket. Rozie loves this, and stands in the cart and waves. She says "hi" with her husky little voice and waves her pageant hand at every shopper in the store. The girl thinks she is on a float and loves every minute of it. I was also loving it , she was in her social element , until she was generalized. "They are all like that, so happy", someone said to me in a sweet voice. It was meant to be a compliment pointing out how lucky i am to have one of those Down syndrome kids that are "always happy", but to me it was hurtful. It took something so wonderful from my daughter and turned it into a symptom of her syndrome. She wasn't a little girl who loved to wave. She wasn't and individual and her behavior wasn't unique to her. It was her extra chromosome that caused this behavior. I wanted her to sit down.
Statistics and generalizations are important , i understand that. We need them to understand Rozie's makeup and how things will work for her, medically, physically and mentally, but when these statistics take away her, then i'm no longer listening.
Generalization will always be part of our lives. Sometimes she will fit the mold,and often she wont. My job is to walk away from them and to accept her even if she overeats, or is delayed in her speech.
Rozie is a piece of Hashem's fine art so perfectly designed. She waves and smiles and wins the heart of the people around her, but not because she has Down syndrome, but because she is a sweet little girl that loves to love. She is my Rozie first and Down syndrome second, she is not her diagnosis and her diagnosis is not her.
I love you my sweet Rozie from the moon and back a million billion trillion times over


Team Lando said...

The Acceptance series has been AWESOME. I love these posts. And Rozie is such a beauty, and she gives me so much hope for Ellie.

Thank you for sharing Rozie's personality and beauty with us!

ckbrylliant said...

Somehow I think it makes people feel better about Down Syndrome to make that generalization that "they are all happy". Maybe it makes them feel like 'it's not that bad to have a child with down syndrome'. I don't know. What I know is that you are wonderful to share your thoughts with the rest of us, helping to validate our own feelings and experiences in this world of generalizations.

chanalesings said...

Amazing post, you teach me so much! I love the picture of her with her nose scrunched up. I want to blow it up and look at it all day!

shevi said...

What a beautiful blog YOU are so right Rozie is a unique child of hashem with all the gifts that he bestows upon her not a generalization People are always looking to fit the pieces of a special needs child into a puzzle I think it relaxes them They are so afraid that a specialneeds child will be born to them or their children and then what will they do My grandson has down syndrome Hes doing very well in school and in his communication skills but people always say to me they are so happy or how is the boy or im sorry for you He has no name Like hes from a tribe not a beautiful individualIts so sad how people think

Jenny said...

This was so well written and so very beautiful to read. I have many times felt the exact same way.

patricia said...

well put. Agreed.

Devora said...

very meaningful post... and gorgeous pics to go along! it's so amazing how people find the need to say whatever is on their mind, not considering the effects it may have.

I'd love to meet Rozie in the supermarket and be the recipient of her smile and wave! Keep the pics coming :)

Sara said...

Thank you for this very important blog post! As the mother of a beautiful little boy with down syndrome I can really relate to this one.
When people comment on the "always happy baby" I usually add "yes, except for when he is sad." :)

Carolina said...

Great post! I wish people would look at my son and don't see the DS first! I wish they could see his personality aside from his diagnoses!

Sue Bee 444 said...

Soooo needed to hear this today, to feel someone else's thoughts like mine. I just put my baby on the bus and all I can think about is that he is riding the short bus. I guess I am feeling sorry for myself and really don't want my child to be identified by what bus he rides or his extra chromosone. Ironically, he was happy and cheerful to be riding the bus and gave me a huge smile and big wave.

ckbrylliant said...

Of all the blogs about down syndrome, that I follow, this is by far the most thoughtful. Bless you for opening your soul for us to see.

lovemy3 said...

I do not like the generalizations either but I would have preferred, "they are always happy" yesterday. I had a woman say to me "You have such a hard road ahead of you." I think I was so stunned that I said nothing.

Love the Acceptance series! Rozie is absolutely beautiful!

Valerie Strohl said...

Beautiful! Beautiful! Beautiful!

Purple to Pink said...

My little one is in the same parade as Rozie. She gets mad about the top seat now and wants to be in the basket, she can see and waive to everyone much better from there!

Whenever someone feels the need to share how happy "they" all are because they caught her at the moment of her showing off her beautiful smile and big blue eyes, I just let them know they don't even want to know what she is like when she is tired, hungry, and can't get what she wants, just like any toddler her age.

Anonymous said...

My Shmueli, has Down Syndrome of course,and he is too "all happy", sometimes i am even kind of jealous, can't be always "all that happy" like him.But i think the Down Syndrome kids are our mirrors, when we are happy and loving they 3 times more happy and loving, and when we're sad or angry they 3 times more sad and unhappy.

punkdiddy said...

Firstly, I want to let you know that big, fat tears are rolling down my cheeks as I type these words. Thank you for singing our souls with your/our pain, trials, tribulations, joys, wonder and beauty.
Secondly, I do wonder why? Why are folks egos so involved in naming, categorizing, recognizing? Why oh why can't they just comment on the emotion that they feel? Like, "it makes me feel so happy to see your daughter so happy". Instead, they must put the guard up and intellectualize...distance themselves. Maybe celebrating joy puts them to close to their own pain?

Our Story: Continued said...

Hi Sheva! I thought it'd be easier to reply to your comment via your blog...didn't know if you'd head back to mine to check. :) My medication is Sprycel (aka: Dasatinib). It's a similar drug to Gleevec with the same goal, but works a little different and a little stronger. I absolutely love these pictures of your girl!! She is so beautiful! You are so beautiful!

one_plustwins said...

Acceptance is what this world needs MORE of Sheva. :) you know i love you and think the world of Rozie. I am blessed to know you in the limited way G-d has allowed for us.

{ T G L } said...

Hi there,

I just found your blog and am blown away... by the experiences you share with such awe-inspiring honesty and bravery, by your beautiful writing, by your stunning photography, by the love you have for your family and your emunah (faith). You are truly a dugma (example).

I am following your blog now and look forward to reading more. B'hatzlachah!

This Good Life

Sarah L said...

I just found out about this blog, or whatever it is called in computer language.
I, too, have a son with that extra 21st chromosone.
He will be 9 years old this April.
I have taught him to read English, from the same books we learned from as children, growing up in London, UK.
He is reading at a 3 grade level, which is what he is, albeit a little slower than the average 3d grader.
His Hebrew reading is slover, my husband only doing it around twice a week, as opposed to the 5 times a week I do the English. He is rotten at numbers, but there is just so much you can do in a day, when you are going out of the house for therapy four days a week.
It is not what the stupid titles that they are given, low functioning, high functioning, only my machines function in this house, and that is when they don't conk out on me, as the washer and dryer tend to do on a more than just regular basis! Bottom line is, it is what you do with them that they end up doing. Treat them like your other children, spend the extra time with them, even if it takes the proverbial 100 times repetition, do it, they are worth it and worthy of it. See what you can bribe them with. I use the red strawberry bamba from Israel. Every paragraph read on the page, my son gets two, and he loves them, no food colouring or other rubbish, horribly low in sugar and high in flavour! A bigger treat comes at the end of the very long page, but not every day, just as a treat. Lots of verbal rewards and back pattng, so to speak, works wonders with them.
My son does horseback riding on a weekly basis, except from July-August when it is awfully hot to do it at the stables, or even outside. been doing it since he was 3 years old.
If you are in public school, in a
Bi-Y programme and don'd like the therapy there, you can make a stink to the B of E and get RSA's for outside providers. I've done it.
Do what's best for YOU and your children, and don't listen to others. My friend asked my daughter if her brother was 99%. I told her to tell her he was 101%. He knows sign language her friend doesn't! He must therefore be at least a couple of % more than she, don't you think so?
I, too, wish those looks would go away, do kids, and adults for that matter, think everyone should look the same? so the DS population have different features, every population is made with their distinctions, not just those with extra chromosones. Why stare like they come from the moon?
I had an audiologist ask me if my son was developmentally delayed. I asked him what did he think when my son had DS? He was floored and started to look him over from all sides. Said he would never have guessed it. Yes, his features are not typically DS, but they do say the nutritional supplements do that. He is on Nutrivene-D regiment and I would swear that it makes all the difference all round, in appearance and health.
They say these special children, as well as those with other disabilities, or those that will only live a short while here, are given the choice, as small compensation, of which family they want to come down to. We are chosen by those special neshamot and we should therefore cherish the choice they have made, for they could have easily chosen some other family to come down to. Would I have rather not have my special son in our family? Never. But if I had a choice I would have had him come down swithout that extra chromosone, like the rest of us. In the meantime he has made us realize what a miracle it is to do things that we always take for granted. Turn over, sit up, crawl, walk, talk etc. Things we never thought about other than try and see which of our children could do it quicker than our friends' children.
What a rat race!!!
When push comes to shove, don't worry, it will all soon change, mashiach is round the corner and will soon mend the broken and heal the ill!

shayneswife said...

I have to agree with you! And you, of course, are a very inspiring mother! I am sure Rozie will grow into some inspiring young lady!