Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Thursday, May 10, 2012

Houston, We Have Lips!

Five months ago today Asher and I stepped off that last plane and our new life together as a family began. The journey to get Asher eating safely - and relatively normally - was one of the first things on my agenda. There are lots of videos in this post but I promise I tried to only post the shortest ones!

Asher was feeding himself in the orphanage, but his technique left much to be desired, plus he at in that super-fast orphan speed, afraid the food would get taken away. I decided to feed him myself for a couple different reasons. There is the whole bonding thing, him learning that he CAN be dependent on someone else, and it's not a bad thing. Then there is the forgetting part. Forgetting how he used to do it so he could relearn a more appropriate way to eat.

This is Asher eating the first week home. His tongue was still huge from years of sucking on it. He did use his lips more than he does now, though not effectively. Mostly his tongue acted as his lower lip.

Then there was that first time I gave him finger foods. Poor kid thought I'd lost my mind, I'm sure. Nobody had every let him touch his food before! Couple of things to point out: 1) his fine motor skills wee about 6 months at this point. 2) he has a hard time getting food IN his mouth. 3) He uses his whole hand to keep the food in since he doesn't know how to close his lips.

And oh the oral motor work we did! I look back at this video and he's still such a baby! Just 5 months ago.

There was the day I decided to teach him to sign "more". Oh how he cracked us up when he didn't want to do something. "I can't see you so you can't see me!" HA! Funny, we don't see this little bit of spunk anymore. (excuse the mess in the background, we were getting ready to remodel. Remember that nightmare???? UGH)

Then there was the day I taught him how to use a pincer grasp. He wasn't very happy with me, and it was HARD work!

A few weeks ago we started feeding and speech therapy. He has 1/2 hour of feeding and 1/2 hour of speech each week. (two separate sessions with two different therapists) First we worked on initial biting.
This video is kind of long. The first few seconds you'll see what progress he's made! And gone is the wild boy who needs to be contained in a high chair! LOL

And here is today! Two days ago, after watching the feeding therapist and getting ideas of my own, I went back to spoon feeding Asher myself. I wanted that tongue IN and him using his lips. I knew he was capable of it, but until I observed the feeding therapist didn't really know how to help him. Yesterday I changed up what I was doing, and here he is at lunch today!

My plan is to to feed him myself for a month, let him develop some muscle memory (and basically forget what he used to do with his tongue) then let him start feeding himself again. I'm so proud of Asher and how far he's come. I think his teacher would be pretty shocked to see videos of the "baby" we had here just 5 months ago!


Becca said...

I LOVE progression videos. I was watching someone's videos yesterday of the last 4 months while her child was learning how to use a communication device - amazing. Asher was just WAITING all these years for someone to show him these things! He's such a fantastic little learner, and you're a beyond-incredible teacher and mother. :-)

Amy L said...

Wow! He is doing so well:) My problem with Liam is that he won't let anything different even near his lips. He has a complete meltdown.:( He will only eat one brand of oatmeal and it has to be the same kind or he will cry. He refuses to let a fork near his mouth or a different type of cup. He cries these big crocodile tears. I have been feeding him but I let him eat his own oatmeal which he still shovels in quickly, even after months of me feeding it to him slowly. I do have a talking tool jiggler that he doesn't mind having in his mouth. He will let me brush his teeth too now without a fight or any tears. I guess it will all come slowly. Thanks for posting the videos of Asher. It's very helpful for me to watch since Liam has a lot of the same issues going on. Good job Asher!:)

Difference2This1 said...

Wow! Way to go Asher!!! He has a ton of progress!! Yay!! :)

Scarehaircare said...

Leah, these are incredible! I shared them with my feeding/swallowing professors. The vids show such a great progression of improvement. I love how in the last video he understands to keep his tongue in (with reminders) and he is speaking! How is his swallowing? Does he have any aspiration issues? Asher is looking so good. WTG, Asher and Mama!

Leah S. said...

to SHC: We had a swallow study done 2 months ago and he aspirated thin liquids on the very first swallow. He wasn't safe until honey consistency. We were thickening everything and then had a meatball choking incident (I thought I'd had them all chopped up!) which involved an ambulance. NOT FUN! then about 4 weeks ago we had another swallow study done and he didn't aspirate ANYTHING! And he chugged an entire cup of thin liquids and was fine! We did have another choking incident 10 days ago. He had a bunch of food packed up in his palate, then must have tried to swallow that bolus, cuz that's what he eventually coughed back up! We have that initial bite, and we have lips, but we're a long way from chewing. My goal is to have him chewing by September when he starts school and has to eat there. Too lofty of a goal?