Hard conversation

Um… so.

The other day Rhema led me to her stencil board.

Yes, she took my hand and pulled me over to the table and picked up her stencil board. That kind of initiation just does not happen all that often, or ever. She had something to say. I sensed her urgency, and I was all ears.

“I UNDERSTAND THAT I AM LOVED BY YOU BUT SOMETIMES I FEEL SO MAD AT YOU BECAUSE YOU BELITTLE ME”

I gulped and my head pounded. There had been a couple times before when she told me she was mad at me, but it was for seemingly simple things like when I took her blanket from her because it was in desperate need of washing, or when I snatched an important paper away from her marker-wielding hands. But this. This was something altogether different. Her words were a ton of bricks on my heart.

“Rhema… I am sorry. When do you feel I have belittled you?”

“WHEN YOU TALK ABOUT ME AS IF IM NOT THERE”

I wanted to deny. And cry. And make excuses. But truth is truth.

“Rhema, I used to always say that you understood words and things happening around you. But on some level I must not have believed it because I was often careless, engaging in conversations about you right in front of you as if you weren’t there. Even if you were unable to comprehend language, I should not have done that. And now I know with certainty that you listen and understand everything… but I guess you’re telling me that I still do that sometimes… treat you as if you are not a hearing, thinking, caring person. I’m so sorry. I must do it without even realizing it.”

I put my forehead to hers.

“Thank you for telling me. Every letter you point to, every word you spell is honest. And you’re right, you are so very loved by me. Even more than you know. Will you forgive me? I’ve made many mistakes and still have so much to learn. Will you continue to be patient with me? Will you help me by letting me know when I am treating you differently or making you feel… small?”

My gracious girl answered,

“YES I LOVE YOU”

 

We have conversations now. Precious, hard, amazing conversations. It is a blessing I hope to never take for granted.

And the girl whom everyone thought could not understand… helps us understand.

IMG_5872 (1)

Advertisements

16 thoughts on “Hard conversation

  1. So honest. Love covers a multitude of mistakes, inadvertent insults, sins. Thank you for sharing this hard real conversation. Love you and your beautiful family.

  2. Oh, the wonderful reality of your deep, deep comprehension, Rhema! How amazing is our God to give you voice…a voice that speaks to ALL of us, not just your mom who loves you more than life. Thank you, Rhema. I know there have been times when I’ve done this very thing—not only to you but to others. You have taught ME to never, ever take for granted that another doesn’t hear and understand what I’m saying. Thank you…thank you! I ❤ u….

  3. As a loving Dad to a wonderful non-verbal Autistic son named Ryan, the idea of one-day “hearing” him say ” I love you, Daddy “, fills all my nightly dreams and my grandest of aspirations. Sometimes I feel guilty thinking that my desire for this validation is selfish on my behalf. I know it’s not, but I can’t help thinking the way I do. But then I remind myself that if Ryan is able to express those feelings to me, it validates to me that he knows he is safe, and cared for, and completely and thoroughly loved. That is the true validation I seek and to hear that Rhema knows without a shadow of a doubt that she is surrounded by loving caring people that will help her every step of the way is an amazing blessing. Rhema inspires all of us and helps remind us that no matter how hard it can be, to never give up hope. Our children are worth every ounce of our boundless loving energy. Thank you for listening to us and thank you for sharing with us Rhema. We love you so much !

    • Brian Ferraro, you can absolutely do this for Ryan. You cannot believe how much happier both you lives will be. I know this, as I began RPM with my son 11 months ago. Now, he is typing to me conversationally. This is the best thing we have ever done. Rhema is an example of what is possible.

  4. Thank you for sharing this. I’m going to go have a conversation with mine now, to see if I need to improve. Tell Rhema she’s helped me too.

  5. Be still my heart.. All parents dred these conversations. My heart goes out to you. You did the best you could with what you’ve got to work with. Glad you will have a new chance everyday to try again.

  6. I remember having this conversation with my Mum and as a Mum, with my children…all with the same result… “YES I LOVE YOU”; I call it our “report card” moment. Lifting you in LOVE dear ones.

  7. My grandson is autistic. If you’ve ever seen the movieFinding Dory that’s our little boy. It is hard for him to say the right words the appropriate words but they are there just stuck. It’s hard for him. It’s hard for us but we just remember all the love.

  8. Amazing growth, honestly, genuine love, and just amazingness. Thank you so much for sharing this conversation…..I needed to hear it.

  9. It’s me again. I pointed out the embarrassing posts.

    Many times you assumed Rhema was incapable of understanding. For example in this blog post, titled “When Hope is your sister”, a girl in Hopes school called Rhema “crazy”.
    https://rhemashope.wordpress.com/2011/03/30/when-hope-is-your-sister/

    You wrote “Rhema may not understand the words, but she certainly understands tone of voice.” You were wrong. You realized she does understand words.

    Then in a video uploaded just 3 years ago you say “YAY!” to Rhema for folding a shirt. Rhema was NINE.

    You only changed the way you speak to her after RPM. Even if she didn’t understand, you should not “YAY!” a 9 year old, or use the words “go potty” or “go bye-bye” to a 7 year old. Imagine how Rhema felt, when you spoke to Hope (3 years younger) more “maturely” than you spoke to her. This isn’t right, even if Rhema didn’t understand.

    • Hi Emily,

      Sorry it has taken me a while to write back. Thanks for your comments. You are right – At times I spoke to Rhema with “baby” words as if she did not understand and sometimes I catch myself still doing it out of habit. She and I have talked about it a lot. I don’t know if you’re on Facebook but we recently posted what she had to say about “baby talk.” She is good about giving me specific examples of words or phrases that are bothersome. Ironically, some of the “experts” (her therapists) spoke to her in simple words and phrases and instructed us to do so as well. Not knowing any better we followed their lead. And her formal testing consistently placed her as having the receptive and expressive language of a 12-month old.

      Of course now I know different. Yes, RPM has changed so much for all of us!

      I must say I don’t entirely agree with the examples you cited this time around. When Rhema was able to initiate, plan and coordinate her motor skills to independently fold a shirt after years of OT and many months of practice it was cheer worthy… and well, I’m not sure I accept your critique of my “Yay!”

      If you sat in my home (today) you would see that Rhema insists on watching videos of nursery rhymes, she mouths non-edibles, carries around her blanket and needs supervision for safety and constant support with every part of her day… much like a toddler. She wants her nursery rhymes and her blanket – they are comfort and routine for her. And yet she has an intellectual and emotional maturity far beyond her 12 years. It’s such a dichotomy. There’s no sinister plot to insult my daughter or the special needs community at large, it’s just me doing the best I can. And I’ll be the first to say a lot of times I get it wrong. I am so thankful to experience the daily mercy and grace of God and the patience of my daughters.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s