Wednesday, September 19, 2007

Recalling things...(Journal#80)

I can easily recall the first feelings I had that Sam was possibly autistic. I can easily recall the first diagnosis, the second, and third...all to confirm that Sam had autism. Watching Oprah yesterday, who did her first show on autism only a few months ago, and followed up already again with Tuesday's episode, made me recall some of those feelings.

Seeing Jenny McCarthy on Oprah yesterday was nice, because it helps get more awareness out there on autism, and helps people understand our kiddos. What was harder for me, was her constant word use of "getting my son back", or that he is in "recovery". I guess for me personally, I have never felt the need to get Sam back, or to cure and recover him. I feel that Brent and I have always accepted Sam for who he is and have worked with him to help him function at times when it may be hard for him. Yes we have had him in intense therapy and programs and speech and OT and tri-monthly medical assessments to monitor his medications. I consider these methods to be tools to help him function in life better, but not change who he is. If you have poor eyesight, you help your eyes by getting glasses. We are just helping Sam along the way.

I guess what I am trying to say, is that we only know Sam as he is. How God blessed him to us. We know nothing different, nor do we want anything different.

Sam has a real hard time with word recall. Some of his worst metldowns occur because he can't recall or remember the simplest words. The other day, we had a 45 minute meltdown because he tried so hard to remember the word cup, and couldn't. And the problem arises when I give him his word choices, and I don't choose the right word he has fixed in his head when he hears it. Here is how it went:

As Sam stood by the refrigerator, he swayed back and forth saying over and over "I need....I need... I need"

I tried to give him some good wait time to recall on his own first, but it is kind of like a balancing act, because if you wait too long before giving him a couple of choices, the meltdown starts, and if you give him some word choices too early, you will have a meltdown because he wanted to think of the word on his own first.

I chose to wait this one out.

"MOM...I need...I need...I need.....oooooohhhhhhhhh" as he then falls to the kitchen floor on his tummy and pounds his fists onto the floor.

I then drop to the floor at his level and look at his face and say "Sam...use your words, not your scream. Mom will help. Do you need food or drink?"

He quickly screams. "drint".

"So Sam, say ...I need drink".

He then rolled over to his back kicking and screaming saying, "no drint".

I am quickly giving some drink choices to see if those are the words he was trying to recall. Of course, to no avail, were any of them right.

Long story short. All along he was trying to say, "I need cup". He was going to get his own water. He just needed a cup.

It just really makes me sad sometimes, when he can't recall simple words like that, and when I see the frustration in his eyes in trying to recall the correct words or phrases. Yes all of those things can make me sad for him, but it never makes me want to change who he is with his autism. I guess you could say I would never "recall" my boy and send him back! :)

A Twist of Faith
Sam and I have been working on some of his vocabulary cards the last few weeks with many of them containing animals. We started this silly game, where Sam says, "What if I was a snate (snake) mom?" and I always follow up with "I would still love you the same Sam."

Well the other day he laughed and he followed with, "Mom, what if I was mouse?" as he knows I HATE them. I gave him the response that I thought he wanted.

I faked a scream, "ooooooo Sam, I would run around the house screaming." Sam very quickly put me back in my place. "MOM!" he said, "You ted you dove me anyway!" (you said you'd love me anyway).

Now tell me he can't recall things! Thank goodness he remembered I will always love him no matter what, and my heart knows that he also knows that God does the same for him.

But Zion said, "The Lord has forsaken me, my Lord has forgotten me." Can a woman forget her nursing child, and show no compassion for the child of her womb? Even these may forget you, yet I will not forget you. See, I have inscribed you on the palms of my hands…. (Isaiah 49:14-16)


GClef1970 said...

I haven't seen the episode yet (it is on my DVR for tonight), but I have to say that I'm 100% with you about the "getting my son back" and "recovery" thing. Perhaps it is because Conor never really "lost" anything... this is who he has always been? I never saw a regression, just a stagnation. He never lost words, he just stopped growing in his communication.
Or, perhaps it is our faith that helps us both remember that God made each of us a masterpiece? I want to give Conor the tools to be the best that God made him to be. I don't expect him to "recover" from anything. No, I don't like autism. But, I know that Conor is uniquely made. And I like that.

Anonymous said...

I praise you because I am fearfully and wonderfully made. Psalm 139:14

I know that my faith has a lot to do with my view on this, but without the autism, TJ would not be TJ. I agree with everything you have written here. Yes, we want to give our kids the tools they need to grow to their full potential, but to remove the autism is to remove a piece of who my child is.

Wonderful post!

KC's Blog said...

Beautiful post :)

"Recover" is a word that gets me upset sometimes.

My grandma called me when she saw Jenny on t.v. and announced, "this lady cured her son of Autism!" Then she went on to say, "maybe you should try some of the things she has tried."

Got me very angry even though I know my grandma is just trying to help. As Parents we do everything in our power to help our kiddos along the way. I tried to explain to her how different K.C. was compared to her son and that he is doing beautifully in his own K.C. way.

I love your post, it says so much and if my grandma could log on to the internet I'd direct her to your page :)

Sam is such a super trooper! You can tell he tries so hard and that he's such an amazing, lovable, smart little boy.

"You ted you dove me anyway!" (you said you'd love me anyway)."

He has an amazing memory! He such a heartwarmer:)

Unknown said...

After reading this, I suggest you get the book "I love you, Stinky Face."

I don't know how old Samuel is now but your exchange about snakes and mice reminded me of that book.

Club 166 said...

Sam may not be able to recall some words at times, but he'll never forget his mother's undying and unwavering love.


Casdok said...

Ditto Club 166!

Anonymous said...

Oh yes! Word retrieval is the bane of our lives / their frustration / our inability to translate accurately. You are doing great and I had similar thought about Ms. McCarthy. My kids just are who they are and it's my job to make their lives smoother by giving them the tools to be successful. As far as I know there's nobody else hiding in there!

KC's Blog said...

Just stopping by to wish you and the boys a Happy Halloween!

Anonymous said...

I hope you don't mind if I direct my daughter to Sam's site. It's so wonderful and our little guy Eric was just recently dianosed a month ago.

I also shared a exerpt from "Living With Autism" that you mentioned.

Thanks for sharing Sams story.

mysamiam said...

Would love to offer support as well to your daughter. My heart knows all too well. Feel free to give her my e-mail~ if she wants to chat.

kristi said...

Yes the phrase "CURE" bugs me too! I just want TC to be the best he can be!

Lora said...

I feel the same way about Griffin, he is my beautiful child and is "perfect" just the way he is, he has shown me the way to love unconditionally and that is how I try to live my life. Sam too is so "perfect" in his own way too and you are the most wonderful mother for seeing him, accepting him, and loving him just exactly as who he is too.

I don't believe that my child needs to recover from autism because it is a part of him and I love every single part of him!

Thank you for such a great post, you are a wonderful writer and Sam is so adorable, I would love to give you both hugs!

Marylisa said...

So, awesome! Thank you so much. My Mom sent me a link to your site. My husband and I just know God created our son the way he is for a very special and unique purpose. If he had cancer -- if he was unwell -- I would want him to be cured. As it is, I want to help him do the very best he can to follow God's plan for him.