Hoping to someday find M's brother adopted in the U.S. -
Myckola Oleksandrovych Markov - 8/26/2003

Sunday, February 3, 2013

Looking for Suggestions from other SN Mamas

I'm calling this post,

Ode of the frustrated mama with a special girl who just wants to be treated normal.

Also known as a vent, and meant to be taken as just that; a vent and a struggle to find *our* normal in a world that doesn't see us as such.

I actually write "Do not hold her hand" on M's name tag when I drop her off for church or any class now. I'd write more, but that's all there is space for.  Her form has a more detailed explanation.

Despite that, I find people are continually holding her hands, elbows, and today an older child kept picking her up all during class.  M was MAD when I picked her up from class, as angry as I've ever seen her.  She said that she kept telling the girl to stop but she would not.  This is a recurring problem for us and I hate to be "that parent," but adults and children alike won't keep their hands off of her everywhere we go all in the name of "helping."

I don't want to single her out as different but we have to find a way to address this.  She is 6 1/2 & has worked really hard at PT to be able to stand up & walk herself not to mention that "helping" her actually makes her fall over.

She will tell children to leave her alone (they tend not to listen) but if its an adult or teenager she tends to feel that she *has* to do what they want.  Sometimes because of her (better but lingering) attachment issues, she will then fawn all over whoever is *helping* her & giving her extra attention because she thinks they want her to act *sweet*  It goes back to being in an orphanage, getting the caretaker of the day and trying to impress them over, above, and beyond the other children so they'd like her.  

I want to yell, "Newsflash!  She doesn't LIKE YOU.  She isn't BEING SWEET.  You are making her nervous by getting affectionate and her reaction is to desperately try to make YOU like HER by turning on the fake charm that served her so well for 4 years as an orphan.  Yes, she'll smile at you, hug you, and even sit in your lap and cuddle; but its because you are reminding her of her former life where caretakers came in and out on shifts and she did whatever she could to get affection and attention from them."

But I smile and say, "Yes she is sweet."  Then walk away grinding my teeth.

I WANT to say "Stop it. She doesn't need your affection.  She has parents."

But I say, "Remember, BG hugs & kisses are for who? Family! That's right, only family."

I want to say, "Please don't help her get up.  She has worked so hard at physical therapy to learn how to stand back up on her own.  Don't take that from her.  She is proud of it!  Let her do it!  Yes, she will fall, BUT SHE CAN GET BACK UP!"  There was a time she couldn't do that!  Don't take that from her!  Yes, she is slower.  Yes, she walks a bit differently.  Its ok!  There was a time she couldn't walk at all!  Do you know how hard we have all worked so that she CAN WALK?  Don't take that from her!"

But I say, "She can do it.  She's fine."

I want to say, "Don't hold her hand.  It throws her balance off.  By holding her hand you are more likely to make her fall.  Then you will want to help her stand up.  Then you will make her fall again.  Then you will think she needs to just be picked up under the arms and carried to her destination.  NO!  Ask her if she needs help.  She will usually tell you 'no.'  Don't take her freedom away by assuming she needs to do things as quickly or efficiently as other children.  There was a time that she had no freedom.  She had to wait for people to carry her to the bathroom.  To the table to eat.  Up stairs.  To her bed.  Don't remind her of that time by taking away her independence.  She has worked too hard, WE have worked too hard to have that taken away."

Instead I say, "She's fine.  She can do it herself."

Does this happen to your kids? Suggestions?  I'm not trying to alienate her or make anyone scared of being her friend (or mine!) because most people are trying to help, but there has got to be a way to get people to respect her personal space without me having to give a speech & be "that parent" wherever we go.

Even taking her to the park or gym when other people are there is stressful because everyone assumes she needs help.  Yes, she may fall.  Yes, she will stand back up.  And yes, she will probably fall again.  Its ok.  She missed that stage as a toddler and she needs it now.

Her legs may not work as well as other children's but it doesn't mean her brain isn't working or that she needs to be treated like a baby.  Yes, she's small for her age, but if she says "STOP! I can do it myself!"  then for goodness sake; leave her alone!  Trust me, she'll tell you if she needs something.

Color me frustrated!  I don't open up about this side of things often because I am so afraid of being judged by those who haven't walked a mile, but my feelings are valid because I am feeling them.  If you ever wanted a look at the inner workings of a special needs mother's brain, here is it!  All we want is for our kiddos to be happy and and accepted for who they are and not noticed for what they cannot do.

This post is also featured on Ellen Stumbo's blog at http://www.ellenstumbo.com/being-real/


Rachael Andrews said...

I have NO idea what that's like and I won't pretend to, but I won't sit her and invalidate your feelings. You are right, they are valid. I hope I have never made a mom feel that way. You might just have to repeat yourself over and over I guess. We think we are being graceful by not confronting at the moment of need, but grace does confront things. People do have to know when they are breaking a boundary.

Kelly said...

Oh yes By all means, speak up for your girl. You sound alot like me, and I never wanted to be that parent either. We need to be if that is what is best for our children to grow. My daughter does not have CP, she was very delayed upon coming home and she worked hard for years in speech, pt, ot and with tutors. "helpfulness" oftentimes put her in a complete tailspin that we dealt with for days, weeks. Speak up Mama, you are not being that parent but her best advocate and her Mama! :)
By the way, Amazing progress by your girl!! I was able to watch a couple of your videos and just the little bit I saw was so wonderful.

landlsmom said...

I won't sit and say I know exactly what you are going through, because my daughter doesn't have CP, but she does have ADHD with ODD, and it is a struggle with other people trying to "help". I opted not to medicate, but go through behavioral therapy, and it irks me when she gets into one of her bad days (which Praise God they are getting fewer and fewer) and people assume she needs to be sat down and coddled, or loved on. She doesn't, she needs to be reminded of what she has learned to do through therapy. It extends into her learning as well. That's why I homeschool. She is a very intelligent child, and it is a struggle like no other for me and her, but I don't appreciate people giving in to her and telling her the answers. We have worked with her for 2.5 years to get where we are. She knows if she is frustrated that she needs to remove herself and try again later. If she can't remember how to spell a word, she knows to go to something else. Those that say, oh I was just trying to help, have no idea that while it seems like a wonderful, caring gesture, they are setting her back. I have had to stand my ground, and be blunt,and a lot of people haven't liked it, but what's best for my daughter is my first priority, not holding back so as not to offend.

Alison said...

I would speak up too - and hopefully as she sees you speak up for her she will learn more and more how to speak up for herself.

PS She sounds amazing :)

We witness a miracle every time a child enters into life; but those who make their journey home across time and miles, growing within the hearts of those who wait to love them,are carried on the wings of destiny; and placed among us by God's very own hands. --Kristi Larson