Saturday, July 5, 2014

The magic rattle

I'm pretty sure all my readers know how Daisy got in the developmental condition that she's in. The story I've been told is that Bio Dad tripped over a baby bouncer and dropped her. Then, when she didn't respond, he shook her a couple times. Then he performed CPS incorrectly.

That story doesn't match up at ALL with the level of damage done in Daisy's brain.
  1. She has a broken rib that had healed before the injury happened that brought her in to Care.
  2. Her retinas detached. Even though they have reattached
    and her eyeballs themselves are healthy, she suffers from cortical visual impairment.
  3. She had severe bleeding in the brain, has had multiple cranitotomies,
    and has a VP shunt installed.
  4. She is significantly developmentally behind.
Daisy has been in our home for 6.5 months. In those 6.5 months I have "gotten used to" Miss Daisy. In general, she is relatively easy to care for (especially now that we have the muscle spasms that were complicating her sleep taken care of). Coordinating all the therapies and doctor appointments is just part of life. Special needs is no walk in the park. But it's our life right now.

Just the other day, during occupational therapy, it struck me once again about how far behind Daisy is though. Two grown women (the OT and me) were down on the floor putting Daisy in the quadruped position (up on all fours) and then literally moving her arms and legs for her to simulate crawling. In order for Daisy to learn each physical milestone, we have had to put Daisy into position and then move her body for her. Over and over. And over and over. And over and over. (wash. rinse. repeat.) We have to put her muscles into position and then train them all over again. I can't count how many times we put Daisy in the sitting position and held her there, putting her arm down to simulate how she should prop herself up, before she could do it on her own. And she was put in the quadruped position probably 1000 times before she stopped complaining about it and can now get in that position on her own. Therapy has advanced to moving her arms and legs for her so she will eventually learn to crawl on her own.

Babies shouldn't have to be taught how to crawl like this.

But Daisy's brain doesn't work the way it should.

This is our life.

I sat in my living room the other day with another shaken baby survivor. A friend of mine (in real life) fostered when she lived where I do. She has since moved further north and ended up being placed with a relative's baby that had been injured severely. She is back down here visiting family and friends and I was thrilled she stopped by to see us! Little J is exactly one day younger than Miss Daisy. He was shaken about a month before Daisy was. His medical records confirm that he was shaken multiple times. (The scarring on his brain and eyes are indicative of multiple abuses.)

Little J barely knows that his arms and legs exist. He can't sit up. He can barely hold his head up. He's more visually impaired than Daisy is as he really doesn't track objects at all. I felt a level of "survivor's guilt" because Daisy is so much farther along than he is.

It's amazing how different the services Little J is receiving are compared to Daisy's. He's really being shortchanged in the therapy department. His mamma is fighting hard to get him in to a new pediatrician and hopefully private therapies. I did my best to show her things that we were taught to do with Miss Daisy.

One of the things I did was explain how you have to teach the muscles what to do by doing it for them. Since Little J is so incredibly far behind, we talked about teaching Little J to roll over. Start with the head and push it to the side. Then touch the shoulder and push it a little. Eventually, touch the hips and give a gentle push, if necessary, so the body will roll over. Then you position the arms under the head to help him hold his trunk up a little. Tickle the back of his neck to get him to lift his head up. Always start each movement by touching the muscles you want the baby to activate. This tactile stimulation will help them learn what to do after you repeat the motion many, many times.

Then I got out my very favorite rattle. This rattle is 17 years old. I couldn't even tell you where it came from. But there's something special about it. It's the first rattle any baby in my home, ever, has held. It's balanced perfectly. It's the right diameter. It's just perfect.
Now, I think it's magic.

I had put every rattle we own in Daisy's hands when she first came. I'd put the toy in her hands, wrap her fingers around it and then pray that she would hang on. At best she'd move her arm once or twice and the toy would simply drop out.

Then one day in February, while my parents were visiting, my mom got some toys out for Daisy while she was in the high chair. My mom put the magic rattle in Daisy's hand and she held on. I remember getting all choked up. Daisy was holding on to a rattle. She kept it in her hand for over a minute. It was awesome!!

I knew I had to get that rattle out for Little J. As he was lying on the floor I took his hand and opened up his tight fist. I put the rattle in and closed his hand around the middle. Little J hung on.

His mamma teared up. This was the first time Little J had ever held on to anything.

I know that feeling.

14 month old babies shouldn't have to be taught how to hold on to a rattle.

So consider this my Public Service Announcement.
If you're tired, stressed or otherwise unable to handle your infant's crying, screaming or whatever....put that baby down in a safe place and WALK AWAY. Just walk away!

No baby should have to go through this.
(Little J took that rattle home with him.)


Unknown said...

Another way to train the brain for crawling. Lay the baby on her back feet towards you. Put right arm up by the head then cross over the babies body to the left knee being the left knee up and touch it to the right hand. Then do the same with the other side. Do this even amounts of times with opposite sides of the body right left right left never right right right left left left. A brain specialist told me in order for you/babies to crawl the left and right side of the brain have to connect they can only connect once you cross the mid line of your body. Hope this makes sense. My niece was killed by her bio father he shook her not because she was crying but because he was mad at her mom. No baby deserves to pay the consequences for someone else's stupidity. I pray for Daisy daily.

Cherub Mamma said...

That is a good exercise!! I do a lot of bilateral work with Daisy - but it's tapping mainly. We really have to work hard to get Daisy to use the right side of her body at all. I will add this to her repertoire for sure! Thank you!!

kate said...

This post needs to reach a wider audience.

Unknown, I'm so sorry for the loss of your niece.