I don't know if I've mentioned this, but for me, having a child with special needs has opened up a whole new world. There are so many things that I've taken for granted - for myself and my children. The many things that children learn so effortlessly. Things like eating and talking and even pointing with their finger. All of these things are skills that we have worked on teaching Eliana. I'm so thankful that someone has figured how to do this and that I have people helping me to teach Eliana.
Today's milestone may seem small - and for most children it probably would be. For Eliana, it was a neat milestone. I was reflecting recently on her eating and how far she has come. Just recently she seems to be tolerating textures better and her oral muscles seem stronger. Part of having Down syndrome is low muscle tone. This includes the muscles in the mouth which affect speech and feeding. The tongue is also a muscle which lacks tone and is why sometimes it is harder for children with Ds to learn to keep their tongues in their mouths. So many little details that I took for granted before loving someone with Down syndrome.
Anyway, back to today. During Eliana's speech therapy, we had been working on oral motor exercises. We were going to give her some food to eat and then noticed that her lip was bleeding. We didn't want the food to irriate her mouth (and give her a bad food experience) so we passed on the food. A little while later, Eliana signed "eat". She then walked over to a low cabinet and pulled out a plate and a bowl. She then set these on the table and crawled up into a chair.
None of this was surprising to me. She likes to imitate and play and I thought this was what she was doing. Well, we decided to offer her the food I had gotten out earlier - "pirate booty". It's similar to popcorn, but has more of a "melt in your mouth" consistency like cheese puffs. To my surprise, she picked one up and put it in her mouth.
For those that haven't been reading about Eliana's journey, here's a little background to put things in perspective. Eliana was 10+ months old before she was able to eat without the aid of a feeding tube. She is still eating foods mashed and we are trying to teach her to bite foods by putting them in her mouth (when she'll let me!) and asking her to bite. She still has huge oral aversions (from the feeding tube) and often does not want things near her mouth.
Oh, and she has *never* asked for food. She has at times wanted food someone else was eating, but never initiated it. This was big for a little girl.
She continued eating and eating the snack. Almost stuffing her mouth at times. (I won't share that picture.) She didn't throw her food onto the floor, she ate it.
This feels like the first step on a long journey where I can see a glimpse of the light. She is getting it. It's been slow, but she is getting it. My little girl is going to learn how to eat.
Blessings,
Leslie
sorry that was me:)
ReplyDeleteI've grown to love Eliana through your blog and this post was a blessing! I never want to take any of the wonderful litle things for granted! Good job Aliana!
ReplyDeleteThere is an award for you on my blog!
Yippee!! for the little girl!
ReplyDeleteI have to say, in 5 years, you'll be shocked at all she's doing! One of my SS kiddos now is a girl I worked with as a newborn (actually, her dad was my principal when I was teaching and our kids were born close to each other) with our birth to three program on all of these same things Eliana's been challenged by, heart surgery and everything. Jordan has come so far and is a delight as is your little one!
Melissa C
Oh! How wonderful!!! I am so happy for you and your sweet little one. My oldest has serious cardiac problems and was on a feeding tube for the first 8 months. We were with Childrens Hospital's feeding clinic until he was almost 5 years old. I know what a happy mom you are today! YEAH!!!
ReplyDeleteBlessings,
Dawn
Hooray! Pirate's Booty is a favorite here! Rejoicing with you!
ReplyDeleteYeah Eliana! Way to go!
ReplyDeleteI've been reading for a while and I had to comment on this. I know exactly how wonderful this is. I have a daughter with DS and another daughter who was very sick as a baby and had tubes in for a while. She had similar oral issues also(gagging, texture aversions, not wanting to eat...well you get the idea). Anyway, I understand that the little things that can sometimes go unnoticed in other children are HUGE in our special little ones. Praise God!!
ReplyDeleteBlessings,
Amamnda
How exciting!
ReplyDeleteAmy @ OnAJoyfulJourney
Leslie, we love reading about and seeing Eliana's milestones. She is truly such a joy. Michaela speaks of her frequently. I have to tell you, Thomas and I have been talking about adoption. I feel like I'm nearing an age where that door will close for us sooner rather than later, but he is open to talking about it and even said, "If it makes you happy..." Some of our other concerns here -- health concerns -- make it something we would really need to be certain about, but you have certainly opened my eyes to the beauty of adopting a Down syndrome child.
ReplyDeleteLove,
Lynn
Thank you friends for celebrating with me! I'm learning more about appreciating the little things - and it's a good journey. I'm thankful for those of you that have also walked this road as you encourage me. I'm thankful to those that seek to encourage me no matter what your experience. I'm blessed!
ReplyDeleteLynn - I love that knowing Eliana has opened your eyes/heart to those with Ds. It has been an amazing journey. Ups and Downs - but sooooo worth it! Praying for you friend.
Mamato8 - going to check out your blog.
Hugs to all,
Leslie
having tube fed a dd for 4 years, I can share your excitement! YEAH! What a victory!
ReplyDeleteMonique