I'm fine, but my mommy has issues!

The power of touch.

What does that mean?
Touch.
For many different people, it can mean many different things. Really it depends on what the person’s touch memories are. These are memories that mostly come from childhood.

Were you hugged and kissed a lot? Were your parents constantly rubbing your head or holding your hand? Were they more distant? Did they frown on public displays of affection? Were you abused as a child? Were you hospitalized a lot? Do you associate touch with warmth and love? Or do you associate it with pain and fear?

For many people it can bring up a flood of memories when I say the word “touch”.
Couple the word “touch” with the word “power” and it can bring up strong memories for some.
Some good. Some bad.

For many special needs children, touch can be scary. Especially if they are visually impaired. Most of our kids spend at least some of their childhood in and out of hospitals.
A lot of times doctors don’t know what’s going on with them medically and our tiny babies must be poked, prodded, stuck, pinched, measured, x-rayed, scanned, biopsied, operated on, casted, molded, fit, helmeted…. The list is endless.

This must be terrifying for them.

Even the most compassionate nurse, technician, or doctor may unavoidably traumatize our child as we stand there feeling helpless and scared ourselves.

Add to the mix a visual or hearing impairment or both…and our child is experiencing negative touch inside a black hole, strange instruments assaulting them from every direction.

Touch? Will then become the enemy.
A thing to pull away from and fear.

As we leave the hospital, confident that once we are home with them we can make it all better with a little snuggle, we may be met with resistance.
Which leaves parents even more devastated.

So how do we teach our children to begin to trust us and learn that touch is good?
That touch can be calming and loving. How do we teach them to begin to explore their world though a different form, a more positive form, of powerful touch? How do we teach a non verbal child that touch can be a way to communicate with another person? That touch has power.

This was the topic of a conference that I recently attended at the Texas School for the Blind and Visually Impaired.

Before I go on I must state that I AM NOT a teacher of the visually impaired.
I DO NOT work for TSBVI nor represent them or their employees in any way.
The opinions and experiences contained in this blog are strictly my own.
I am only stating what I learned in this workshop and my experiences as a mother of a blind child who is non verbal and has other disabilities.

Okay. Whew. That was awkward.
Moving on.

When Oli was first born there were two things that were emphasized constantly.

1. Carry her around everywhere.
“Attach that baby to your body as if you had grown a second head. If you go? She goes.”
Okay. I carried her around for 9 months inside my body. It shouldn’t be that hard to carry her outside it. And it wasn’t. For about a month. And then do you know what happened? She got bigger! How dare she! So it became a bigger deal. But I did it and I carried her around faithfully for a very long time. Now she’s almost 7 sooooo… You know what’s funny? I STILL carry her around sometimes. That girl can walk! So now I get yelled at for carrying her. “You need to let that girl walk! Don’t you carry her!” Ah well… Whadaya gonna do right?! Old habits and all that.

2. You need to talk to her.
“Constantly. Talk about this and that and the other thing. Talk about all of the things all of the time. Talk. Talk. Talk.”
I’ll let you in on a hard to believe secret.
I wasn’t always as talkative as I am now.
No really! I promise! I used to be quiet!! Ask my mom!
But when you give birth unexpectedly to a blind child, you adapt.
So I became a talker.
Another little secret.
I don’t just do things a little bit.
Oh no. I do them all the way and around the block, down the street, running, racing. I do them until everyone wishes that I would stop doing them and then I do them some more because…
what do THEY know?!
I’m going to do all of the things.

I talked to that baby morning and night. I explained and described, sang, whispered, made up voices, chanted, hummed…if you could do it with your voice? I did it.
All the time.

Do you know what they told me at this conference? Almost 7 years later.

That I don’t need to talk so much.

Ummmmm….

Excuse me? I don’t think I heard that right.

Apparently I had heard right. I talk too much.

Shocking, I know!

When you start to use touch with a visually impaired child and pair it with too much auditory information the child becomes overwhelmed and cannot focus on what you are trying to teach.

If I’m trying to show Oli a cup and she’s holding it I can guarantee you, if I’m trying to teach her about that cup, I’m going to tell her it’s yellow and has a picture of a flower on it and that she drinks juice from it and that the lid is green and that it has a straw.

But I don’t NEED to tell her all of these things.
I just need to say “cup”. That’s it.

Here we get into the nitty gritty information from the conference.
Here we talk about touch.

Don’t touch your child right away. Observe your child.

Man this is confusing right?! First I tell you we’re going to talk about how to touch your child and then I tell you not to touch them! Just wait. Next I’m going to tell you not to talk to them either.
Stay with me here guys.
I’ll explain. I promise.

Do not talk.
Do not touch.
Just watch.
As you watch them think about these words…
“I notice…”
and
“I wonder…”

Notice that every movement your child makes may have meaning to him or her. It may be some kind of communication. And then wonder what they are trying to say.

For example, one of the teachers noticed that Oli flaps her hand against the side of her face sometimes. She wondered if maybe that movement had meaning. Maybe she was replaying a particular movement from a song they sung at school or something that she had played with earlier.
I had just always assumed that it was a stim, but maybe it’s not. Maybe it means something to Oli.
I had never thought of that before.

Watch to see if the child is open to talking to you.

Nope. Don’t do it. Don’t touch them yet.
We’re getting there. Trust me.

First of all you need to check your own agenda. Are you wanting to force some information and touch on a child that is clearly showing that he/she is not open to talking with you? Did they turn away from you? (Oli does this a lot. Especially when she knows someone is going to make her work.) Or is the child displaying an open posture with relaxed hands (or as relaxed as that child’s may get)?

Second, greet the child. This does not have to start with words.

Yep. Don’t touch them yet. Don’t talk to them either. Even in greeting.

I know!
This is just crazy stuff right?!
Really though. You don’t want to overwhelm them if they have shown an interest in talking with you.

I’ll say it again.

This does not have to start with words.

You may just go up to the child and place your forearm or hand next to theirs. You can also offer them an open hand and place your hand under his/hers.
Go slowly. Go calmly. Even if you say nothing and don’t even touch the child, they know you’re there.
(Trust me. I’ve had many, many experiences with my daughter where I walk in the room and she knows I’m there immediately. It’s impossible to sneak around her.)
Afterwards you can say “Hi. It’s mommy.”

Then you wait.
DO NOT GRAB THE CHILD’S HAND.
Let the child decide whether or not they want to say hi.
Limit the auditory communication and just focus on touch so you do not overwhelm them.

Tactile following.

Yay!!! We get to touch them!!

Finally.

This is to do be done all hand UNDER hand. NEVER hand OVER hand.
You are just going to have your hands under theirs.
Don’t anticipate their movements or cues, but get them from the child.
The best way to keep any conversation going is by asking the person you’re talking to questions about their topic.
That’s exactly what you are going to do with the child.
By following the movements of their hands with your own, you are “talking” about THEIR topic.
Not your own.
You are just following or imitating their hand movements.
When we follow them we are attending to their conversation topic.
If we do this hand over hand the child is not having the experience because we are doing it FOR THEM.
This is not their topic.
If the child will not allow your hands under theirs that’s fine. Don’t push it.
Just leave your forearm against theirs and mimic their movement. They will still feel your movements. You are still talking with them. Eventually they may allow you under their hands.

When you introduce an object to explore and play with, do the exact same thing.
Offer the object with an open palm, allowing the child to touch or grab it as they wish.
Then as they explore it, put your hand near or under theirs and follow the movement. If they tap? You tap. If they bang? You bang.

Tactile Modeling or Sharing

NOW we can talk. A little bit. A VERY little bit.

This is where you are sharing something with the child.
You are trying to get them to “watch” what you are doing with their hands.
This does not mean you are grabbing their hands and forcing them.
You are still maintaining your hands under theirs and are starting to direct the conversation to let them know something about you.

For example, if you are telling me about a movie with a tornado in it and you go on and on about this tornado and I’m asking all of the questions about the tornado “Have you been in a tornado? Have you ever seen one close up? Did you watch that other movie about the tornado?” eventually I’m going to want to tell you about my experience in a tornado.
(I really have a good story about a tornado.)

This is how a conversation works. Both parties give and take from the dialogue.
This is what we want to do with our non verbal kids with touch.
This is also where we begin to label objects with words.
Not up there in observing or following. In the sharing stage.
Make sure to use simple consistent labels, Don’t use too many words.

We take the topic that the child is interested in and we begin to change it and show them a different perspective.

For example:
With Oli, the common topic with her hands is clapping.
My god that girl loves to clap. Clap. Clap. Clap. Clap. All. Day. Long.
So as I observed and then followed her, she wanted to clap. I followed her clapping for a while and then I began to rub my hand together back and forth. Well, she was NOT going to talk about that. She wanted to clap! So she began clapping her hands again. I followed her hands for a bit and then began to rub them together again.

Once again she didn’t want to talk about that! She could care less about my experience in the tornado. She wanted to talk about herself!

I again followed her clapping and then began to rub them together again.

She stopped.

And then she hung on to my hands and followed along while I rubbed them together!

And then she went back to clapping.
Because my girl is nothing if not stubborn.

But as we repeated this over and over she started to want to talk about what I was talking about and began following my hands more and more.

Finally, as I rubbed them together, she stuck her little hands in between mine and felt the inside of my hands as I moved them back and forth.

And then she did something amazing.

She pulled her hands away and STARTED RUBBING THEM TOGETHER!!

She rubbed them quickly and then smiled HUGE and clapped her hands, but this time like “Yes! I see what you’re saying girlfriend!! I want to talk about your tornado!!”

It was awesome!!
She was so excited and it was so beautiful to watch as that lighbulb went off inside her head.
She understood.
She knew what I was saying.

It was beautiful and I was so SO very proud of her.
I wore a smile the rest of the day with that memory and the knowledge that my girl was beginning to understand that touch meant communication for her.

That her touch had power.

I am so very grateful for these moments with my daughter.

Through all of the sadness and the heartache and that continuous guilt that what I do for her is never enough…

That I am never enough…

There is a light in the darkness and it is moments like these when I know…

that I am.

If you would like to see a good example of tactile following, there is a video below of Seth and Oli demonstrating it with a shaky can. A toy that she normally would have thrown over her shoulder in about 10 seconds. Because Seth was playing with her she was engaged for at least 5 minutes. She probably would have played longer, had we more time.

Here is the thing about our kids and toys. They do not have to play with the toy correctly. The same with objects. They do not have to use them appropriately. Just go with it. Just play however they want to play and follow their lead. Don’t feel guilty or bad if they are like my daughter and lick the hairbrush instead of brushing their hair. They are exploring and learning and it’s fine. Don’t worry about it. There is plenty of time to teach them what a hairbrush is for. And if they never learn it or use it appropriately? Then it’s still fine. They are who they are and will be how they will be. Regardless of the amount of time we waste trying to force them to be different. Just love them and play with them and enjoy them. It will be how it’s going to be and I promise you it will be fine.

It will be MORE than fine.

It will be amazing.

Tags: blind, communication, deaf, family, kids, moms, non-verbal, power, tactile communication, Texas School for the Blind and Visually Impaired, touch