Monday, December 5, 2016

How to interact with Abby


How to Interact with Abby

We got a dog... Abby's not impressed



I was doing my usual distract and redirect with Abby during a visit with a friend when she asked why I kept moving Abby away from her. I was a little mortified because I hadn't even realized I was doing it. It's second nature to protect our guests, I suppose I assume the best way to keep friends is to avoid hurting them?

I know Abby's not trying to be mean. I know she's trying to interact, but somehow I've forgotten the importance of teaching others what to do in Abby's world. Somewhere in the course of the past few years I guess I've grown weary in teaching... or people aren't as open to a big special needs child who may lead with what seems like aggression?

I don't want to think through the reality of an aging child who is no longer the tiny person everyone  flocked to. Things change with her growing up physically, and my feelings are more fragile on this topic than I'd like to admit. The crowd that welcomes her has dwindled. I haven't let my heart deal with the fact that these people didn't grow up with my sweet angel. They haven't watched our journey for fifteen years. They're not vested in us... yet. Walking into a new community with a small special needs child may require a lot of work, but a big kid with the same needs isn't embraced in the same way.

Maybe I've lacked the patience and energy to re-educate our new community? It is odd and disheartening when we're at a gathering and the majority of those in attendance seem to act as if she doesn't exist. I've gotten used to the idea that some won't make an effort, but I realize I may have grown too pessimistic in assuming that encompasses most. It's difficult to guard my heart because I could grow bitter at those who still ignore Abby or us in their discomfort or indifference. When I tell people and they still ignore, that's even worse.


**Disclaimer: If you continue reading this, you're are now responsible to use this new knowledge...
 


FRIES... one of Abby's favorite things!




The Stats

Abby is fifteen but developmentally like a two year old. She is non-verbal but understands more than we think. Much like any toddler, she really doesn't like to be ignored. She may grab at those who pass by because she's trying to get their attention! I always think of the book Horton Hears a Who to describe this. Grabbing is Abby's way of screaming, "I am here! I am here! I am here!"


The awkward part about realizing she wants to interact and stopping to try is the fact she processes your words significantly slower than most people. You may say, "Hello!" and reach for her hand to shake it or give a "high five," but when you only wait a few seconds for her to respond it's just not enough. Be patient because she'll often raise her hand for a high five up to a minute after it's offered. I heard this delay best described in terms of mental pathways to process information. Typical people have superhighways with waves zooming around delivering messages to and from the brain in fractions of seconds. For instance, when I decide to turn on a light in a room, it takes a fraction of a second for my brain to send the message to my hand to do it. Abby operates more in deer paths through the woods. Hers are slow moving rocky paths or undecipherable altogether where information gets stuck. This is also why interactions with too many words often get lost in those paths because she lacks the capacity to take it in. It's like loading a classroom of children into a two person plane. Simple one or two step interactions are more likely to register; although, they may be lost too. Think of what you would say and how you would say it to a toddler (minus the baby talk... that drives us crazy). I know it's hard to see a teenager and think toddler, but it is the best way.

What to do with the digging... and blood

The next best thing to know about interacting with Abby is her sensory system is screwed up. She is sensory seeking and sensory defensive. This means that she seeks input (touch), but can recoil at it as well. This is what makes interacting with her confusing. She is reaching out to you with her hands, but once she grasps yours she may start digging her nails into you drawing blood. Try to take her hand in yours and you'll see the recoil.

When she was little we tried to "pop her hand" (like you would with a little one going toward an outlet) once or twice to correct aggressive behaviors before we realized she didn't feel a thing and that wouldn't work. We don't think it is fine that she draws blood or pulls your child's hair, but we haven't found anything that seems to deter it. We have seen every specialist in the book about giving her other sensory input but it boils down to the fact we don't have a discipline strategy for a two year old. As annoyed as you may be to have her dig her nails into your hand or pull your hair, imagine living in the same house with it for over a decade? She just wants attention.




We've found the following 3 things to be the best way to deal with this behavior:


Know she's probably not angry or upset with you 
She really, really wants to interact and will be puzzled if you scream and run away. We've tried a big negative reaction and she actually likes that response. Like Pavlov's dog, it only trains her to do it more so she can get that kind of amusing reaction. Telling her it hurts or hurts your feelings is just a waste of words and annoying for us to hear. Announcing your displeasure is equally annoying to the parents and all those around who will have to hear it over and over and over again at any gathering.
Become familiar with the release switch... her pinky. Gently pull her pinky away from your hand first and the rest will follow.


Walk away
She is seeking input inappropriately. The best natural discipline is to take that away by removing yourself from her reach. She's not fast but she is persistent. She may follow you around seeking what she wants. It's usually because she likes you rather than because she's eerily trying to hurt you. The important thing is to come back to her after a minute or so. I know it feels so odd to see her smiling as she inflicts pain. Understand this is because she is happy about the interaction rather than rejoicing in your suffering. This has been a process for her family to fully grasp. She has three younger sisters.

She is seeking input and touch from you, so give it to her in a different way
She likes BIG hugs. I know this will seem contradictory for those of you who have hugged her only to have her push you away. You only would have to see her face at the initial squeeze to know she desires it. Because she lives in a world of unusual and complex, the hug gets to be too much and her body rejects it. Temple Grandin (grown lady with autism & spokesperson) explains it best by saying it's a weird dichotomy of feelings and emotions. She wants it and she can't handle it all at the same time. She actually built a "hugging machine" to get the input she needed. Therefore, we just envelope our little lady in big bear hugs and then let her be free when she pushes us away without letting it hurt our feelings.

We will also give her deep pressure message on other parts of her body. I'll rub her head, arms, legs or back when she is seeking my hands. This may decrease her insistence on obtaining your hand. Foot massage is also a great input for those with her for longer periods of time. The good news is she is sometimes just hand holding for moments now, so don't feel like you must avoid her hands at all costs.

Abby love... nothing like it :)

"NO"


We do tell Abby "no," but it's more for the benefit of little ones who may be watching or get caught in the pinch/pull. While Abby doesn't comprehend that she can inflict pain, other little ones don't either, and we don't want them to think it's okay for Abby to hurt them. It only potentially adds to the fear of our big girl hurting them if we don't step in to protect them. We want them to seek her out and find ways to interact rather than avoid or be scared of her. Think about parents who correct their children and pull them away when they come up and ask questions. It breaks my heart because it teaches the child to avoid or, worse yet, fear Abby and kids like her. I'd much prefer them allow kids ask questions.

Part of our world


One of our greatest desires as a family is for Abby to be a part of our world. This may seem simple to you, but it's so not an easy task. It's WAY easier to just leave her home with a caregiver. Although we may need to do this at times, it would be a much more accurate reflection of our family to have Abby with us as much as possible. With that said, it requires our people getting used to Abby and learning to interact with her. It is good for society as well. The trend in our world is to remove kids like Abby from institutions and have them in our communities, but this is tricky when people don't learn how to interact with those who are different from them. If you don't see people in need, you may be a different kind of selfish and not be looking. We often fear what we don't know and it's easier not to try than to do it wrong. I'm begging you not only for our sake, but for others like us to open your eyes and do it wrong... until you learn to do it right.


Ambassadors for disability


One of the best things about our family's role as ambassadors for disability is that Abby doesn't understand. You may freely ask me anything without offending her. You must be careful with other kids because they may understand more than they can communicate and talking about a child in front of them can really be hurtful. Abby won't be offended or deterred if you are awkward or do it wrong. She is really forgiving (maybe forgetful) and will gladly be the guinea pig to practice interacting with different kids like her.

Don't get me wrong, there are plenty of days where we tire of educating everyone. All too often we lack the capacity to take on another group and just stay home. I admit I did this yesterday. I skipped a Christmas party because I didn't want to educate. I am more tired of this now that I'm older. It's also exhausting to start over with this task in a new community that knows little of our girl, but it is also part of her greater purpose in all of our lives. You can pray for my heart in this. It's more about me or us than her these days. We don't take her because I'm too tired to teach you how to interact, and my head has a hard time with so many who simply seem to be choosing not to. Ignoring Abby grieves me (us).

I'm not hyper politically correct because Abby doesn't understand, and I choose grace because the rules seem to keep changing. With that said, some do understand, so you may find it helpful to think about using "people first" language. Abby is a girl first; therefore, she is a girl with special needs rather than a special needs girl. A child with autism rather than an autistic child. We all get it wrong at times, but loving people well requires we learn from our mistakes and try to improve. Also, I invite you to ask questions, but know it is offensive for an adult to ask "what is wrong with her?" There is nothing wrong with Abby. Ask me to tell you about Abby. Ask me how to interact, if she talks, or how to dislodge your bleeding hand; but don't ask me to remove her from the room when she is "singing" (joyfully raising her voice).

Ask question rather than avoid us in your life. Ask how to make accommodations at a gathering (or just your house) instead of crossing us off the guest list because you don't know what to do. Be flexible when we show up 30 min late, have to leave early, bring a caregiver, or need to hide breakables from our 4'8" toddler who likes the sound of breaking objects.


Danielle... one of Abby's favorite people :)

*Warning... this might wreck you*


I will warn you becoming apart of Abby's world will mess you up. Her love and devotion is so raw and genuine. When she backs up onto your lap like the toddler she is in her head, there may be public tears. When she dips her head into your chest to get a hug it may be your undoing. You'll never be the same. I don't fully understand it, but I know it to be true after fifteen years of Abby. She's so complex and simple all at the same time. My friends, she is beautiful and perfect... exactly who God created her to be.

I don't know all that God has planned for her in this life, but her innocent affection is seriously moving. If you ask for a kiss... wait for it... she will plant one gently on your cheek or give you hers. If you've never seen her smile or heard her laugh, you've missed one of this life's greatest pleasures. True joy bubbles up from within her and the only way to describe it is the joy of the Lord coming through her.

She is a simple vessel, existing for HIS glory as her life changes ours. If we haven't formally done so, we invite you now to be a part of our world and thank you in advance for taking the time to do so.




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