I am
a Special Needs Parent-
that makes me a Rope Walker.
~
Sometimes, just 1 THANG-
(you know the word”thang”- it’s a gargantuan THING)
breaks me down, open my floodgates and I begin to cry.
I am a rope walker. When I look down I’m afraid of falling.
How do I begin to explain the tight rope a parent walks when they have a child with special needs?
[Tweet “#Worries and #fears are #multiplied when you’re #parenting a child with #specialneeds.”]
On one side- we recognize our child has problems; difficulties, limitations, challenges, disabilities and we want others to understand that and also have compassion and grace for our child.
On the other side- we dream big dreams for our children; shunning low expectations and working triply hard to ensure their growth and maturity. And we want others to understand that seeming contradiction. I don’t want people to give Bethany a proverbial “pass” just because she has down syndrome.
[Tweet “#Parenting a child with #special needs requires balancing #reality and #dreams.”]
I am a rope walker. I’m learning how to balance reality & dreams for my child with special needs.
I wobble. Precarious, tentative, back and forth on this tightrope of life- I try to make small adjustment and take incremental steps. Then Bethany does something that throws me off balance. Church was yesterday. Bethany was dressed up and apparently feeling pretty good about how she looked. She approached one of the college guys – put her hand on her hip, puckered up her lips- and said- “Hey babe, want a kiss?”
I’m a rope walker. I get unbalanced and fall off my rope.
Everyone laughed it off- thought it was kind of cute- so “Bethany”.
But to me, it wasn’t cute or funny- it was even potentially dangerous in the wrong setting! I am overwhelmed at the enormity of social skills that we need to be continually teaching. I was thankful my friend told me it happened, so we could talk to Bethany about appropriate and inappropriate.
The thing is, everybody loves Bethany and they do understand her disability- so they are gracious and kind and give her a “pass”. And I want them to! But I also want her to be held accountable just like any other 13 year old with the understanding that she will need to have concepts explained many times before she really integrates it into her behavior and understands.
Bethany and I did talk. Again. And then we prayed. We prayed for God to show us how to love others and show appropriate behavior.
I am a rope walker. When I look up I can keep on going.
[Tweet “Our #help comes from the #Lord- maker of Heaven and Earth! #parenting “]
Surprising Treasures: Psalm 121: 1-3
I lift up my eyes to the mountains—
where does my help come from?
2 My help comes from the Lord,
the Maker of heaven and earth.
3 He will not let your foot slip—
he who watches over you will not slumber;
There is something called “Circle of Friends” that we have needed to do for some time. Bethany’s close friends at school and church really enjoy her, but I don’t think they fully appreciate how little Bethany understands danger and the need for boundaries. Both intellectually and socially Bethany is at a much different place than her friends.
“Circle of Friends” is when the parents of a child with special needs meets with their friends and peers to explain that child’s differences. This creates extra social protections for that child. Bethany’s trust and out-going personality is a delight. But to be honest the very things that make Bethany so wonderful are the also the things that make her vulnerable to exploitation… Since Cindy and I can’t always been “there,” we need her “circle of friends” to help us.
As I think about it, don’t we all need a “circle of friends” to keep an eye out for us? Sure sounds like the Body of Christ in action to me! 🙂
<3 You are one amazing rope walker!
thank you Amy- I fall off balance many times 🙁 but He is my ever present help – hugs
I completely understand! I love Bethany so much and I think her little “antics” are cute. But, you are right! I certainly need to help her and guide her about being appropriate and safe! I try to do this sometimes when I interact with her at school, but I bet there are plenty of times I just laugh something off without really thinking about it. Please educate me!!!
Oh Kelly- hugs!!! On one hand- I don’t want everyone crashing and correcting her all the time (which literally could start to happen) When she was younger- and all the kids were home- everyone was trying to “help” all the time- and poor Beth- talk about overload- it was all done out of love but too much to process. I feel like I need to send out a new flash to everyone- This month- we’re working on appropriate behavior on __________fill in the blank 🙂 It seems to me that boy/girl relationships are paramount right now because all her siblings are married, dating, or going to be married AND there’s a lot of babies being born. I need help to help her focus on just being in middle school- enjoying friend relationships- or perhaps even setting goals for ways she can help someone else. She’s rather bored by arts & crafts or “playing” but loves to role play, cook, and especially loves to help others. We should talk and brainstorm. 🙂 hugs dear friend and thanks for loving Bethany so much!
Love your transparency, Cindy. You’re honest and kind. Surely this keeps Him so close to you.
The rope walking analogy is wonderful!! Maybe we’re all walking on ropes–just different kinds.
XOXOXO
Thank you sweet Julie! We all walk our own ropes- agreed. As I write about special needs- I hope people can see how raising a child with special needs is just another opportunity to trust in the Lord and look up for His strength! Praying and knowing- He will help me when I fall and keep going one little step at a time. hugs
My very skin aches, imagining the responsibilities any parent, especially a conscientious one, like you, with a special needs child faces. How many times I second-guessed my own actions as inappropriate in a given setting, in spite of parents, Mom especially, doing their best to help us anticipate and deal with the world outside the safety of a childhood home. Thank the Lord for His loving care in every circumstance, or we’d all be basket-cases for sure. Hugs to you, Sweetheart!
Edy! Thank you for always understanding! It’s “interesting” enough raising/teaching typical children but when you add that little extra “hurdle” – well sometimes it’s daunting. However, as I was reading your comment, the Lord really spoke to my heart- “His loving care is the same for every one and every situation” – so while I may think it’s more overwhelming- He certainly doesn’t- With God, all things are possible. hugs and thanks for always rejoicing and weeping with me!