Monday, November 15, 2010

From the Outside Looking In

I have realized today, that no matter how close you are, how supportive you are, how aware you are. Those around you really just don't understand. Unless they are in your shoes, walking your walk, they are just by standers on the outside of the window looking in. Saying they can dance the dance, sing the song, but the reality is, only you and those in your new world truly understand.

Today I had someone very close to me say something to me that I took very offensive. I know myself, and my tendency to over react, so I shared this "situation" with others on both sides of the spectrum. I had my own mini therapy session with those that are a member of my Down Syndrome family, and those whom are not. It's sad that every MOTHER who has a child with Down Syndrome understood exactly how I felt, and every one who did not, thought I was over reacting.

My Thought Process
When you make that comment, using "retard", "short bus", "special ed"...9 times out of 10 you are using that statement to refer to someone or something in a negative respect. Well the reality is, that the terms were all once used on a daily, clinical, educational, normal basis for someone just like my daughter. And it HURTS!!! So, when I may ask you to not use that phrase or word again, my thought is...Some child may look up to you, whether its your daughter, son, niece, nephew, cousin, etc. And that child may notice that you use that description to make fun of or describe another person. Well, what does that child do...he goes to school and uses that same word or phrase to call his friend, or someone he may see at school who is a little bit different from him, or that child that he could be making fun of could be a child with Autism, a child with another chromosome disorder, a child with Down Syndrome, the daughter of one of my friends...or even my own little Grace.

It's hard to make someone understand, when they are on the outside looking in.

Do you think of Down Syndrome every day?
YES I DO!! Do I want to? NO!!!
You may see Grace once a month, or even once a week. And what you see is this cute little butterball who smiles and coos at everyone that crosses her path.
I see Grace daily, and although I see more of our families features in her, then I see Down Syndrome features, but I would be lying to say I don't also see where she resembles some of my friends kids in my Down Syndrome family. I see the slanting of the eyes (still beautiful) the shape of her head (I say to hold all the smartness) the bend in her chubby pinky (her signature bend for the tea cup hold).
I am also reminded on a normal basis when we have therapy sessions, and I am told how well she is doing, but also realize that we are several months behind. I am also reminded when I take her to the doctor and one of the first things the specialist says, "Oh, she is Downs" (ARGH)
I am even reminded when we are in the store and I have people look at her, and smile...that sympathetic smile, and stop to tell me how adorable she is. Would they have said that if she did not have Down Syndrome? So yes, I think of Down Syndrome every day. Do I want to? NO!! Do I think it will get easier as the years go by... I sure hope so!

She is handling this so well...
Compared to what? What does every Mom do with the obstacles that come their way? They make it through it. It's like a great movie once said "Men are supposed to be made outta steel or something?" when the reality of it is...that is what a MOM is made of!!!
Most days are good, and most days are easy. But every mom with a child with special needs, still has her hard days. I am not going to say its a hard and unbearable life. But there are those moments where you hurt for your child. Not because you want your child to be any different, but like every mother you want the best for your child, and wish your child didn't have to try so hard, or put the extra work or effort to do something so simple, that so many others take for granted. But, I truly feel God hand picked us, and chose each and every one of us individually, because he knew which ones could handle the obstacles and EMOTIONS that were going to come their way, and make the best of it, and love that child no matter what. My Love for Grace, is what gets me through those hard times.

So, in conclusion, I hope my post allowed for all of those who do not have a child with Special Needs, that are on the outside of my world, looking in, can have just a little bit better understanding of why something that may not mean so much to you, can hurt and be so personal for me.


  1. Any parent that doesn't have a child with special needs should understand this: When you use retarded or special ed in another context, you are saying, "You know, retarded like your daughter" or "You know, special ed, like your son" to the parent of a special needs child. Any parent that thinks it is over reacting is being deliberately obtuse.

  2. I'm not just saying this...
    She really is beautiful! And it sounds like she has a beautiful Mother, too.

  3. You could have grabbed this post right out of my own head! We walk a similar path but we reap similar blessings. There is nobody like my precious Ezekiel (and his extra chromosome) to brighten my day! Grace is gorgeous and, with or without T-21, you can tell she would be! You do a great job in this post of educating but even more, you put a face and a heart on parenting a special blessing!

  4. As a mother of a precious daughter with Down Syndrome I so appreciate your words. My "baby" is 10 years old and the feelings you mentioned are things I fully understand and have felt for the past almost 11 years. You are so blessed, as we are with such a precious gift, but with that gift comes many difficulties. Like you said, I wouldn't change anything because then she wouldn't be the precious little girl we love so, but it still hurts to have any struggles with your kids and to see them struggle in any way. God Bless You on your journey!!

  5. Felicia, I couldn't have said it better myself! We may be new to the DS world, but as DS mothers we are united! It is always hurtful when you hear an ignorant person misusing medical terminology, even if they are not referring directly to your child. Also, I must say, it struck me hard when you wrote about the "sympathetic" smiles you get from strangers -- Whenever we get "the look" I want to scream at them "Don't feel sorry for us! We are BLESSED!" -- Our son has blessed us beyond words and even though life may be more challenging for him, he will NEVER question whether or not he is loved. I too believe families are chosen for these special gifts, and visaversa - most of the time, I feel like we needed our son more than he has ever needed us! Keep on writing, Felicia, you are a voice for so many!

  6. I have been thinking about lots of these things recently...
    especially how no matter how much i dont want to think about Ds, it stares me right at the face, right after Ethan... and people who might be fed up with my "over reacting" but they have not an ounce of knowledge what goes through my heart and mind each second of my life... I've said before, if they had a child like ours, they would be dancing to the same beat...

  7. I get that "is he downs" crap everytime we leave the house!! I just look at them and give them my "ur a dumbass" look and say, "nope, he is AAsher. He haaaassss Down syndrome, but there is nothing downs about that."

    Over reacting???? I think not! It's ignorance and unwillingness to take blame that I can't stand!! You better believe I point out to people that say such things and do you know that 9 out of 10 try to convince ME that it's OK!! What?????? I have lost many people that I thought were my friends because of statements like these. If they can't see how hurtful their words are and change, then we don't need them. I always make sure to let them know that they may not understand what it's like to be, or have a child or someone they love with "special needs", but that they could get hit by a car on the way home today and become a member of the "special needs" community real quick! (I really hate those two words)
    AAsher's DS diagnosis came with some thick skin and a flat out "I will tell you exactly how I feel" attitude for me.
    Tell me who she is Felicia, I will go kick their ass for you :-) N-O-B-O-D-Y says things that could hurt our mommy Felicia & Gracie and gets away with it!!

  8. My SISTER used the "r" word in MY car! I was livid. I know it was unintentional but none the less, I was stunned. I have been told by some of my family I over reacted, she refuses to apologize for a mistake. Your so right on the outside looking in. I am so hurt and they just don't get it.

  9. One of the reasons why I was terrified to reveal to my family that my daughter was suspected of having high functioning autism is because of their lack of empathy and their lack of ability to understand of this. I rejected the school's help at first, because I was terrified of the Autism label-mainly because of other's ignorance. Its sad really. But I got a grip. I really appreciate your perspective.