Friday marks THREE MONTHS since K has been home. Three months! I can’t believe it! Here’s a summary of her three months home. The first month was spent settling in and learning what it means to be a part of our family. The next month was filled with doctors’ appointments, evaluations, and procedures. The third month has involved establishing a routine and winning little victories, each one important. It reminds me of a Rend Collective song that I’d like to share with you. It’s been a while, so listen…
Love cannot be tamed / You shatter every chain / Let our praises run wild and free / Your lion heart is alive in me / Let our freedom and joy begin / With You we’re dancing upon our chains / With You we’re soaring on eagles’ wings /
You made us for so much more
Kristiana is showing us every day that God made her for His glory. She is shattering expectations, basking in His freedom, and spreading joy wherever she goes. Here’s how:
A CUP! EATING INDEPENDENTLY!
K drinks great out of an open cup, but she can’t grasp it. I had been hesitant to buy much for K, not knowing what PT and OT might suggest. But, I finally bought a cup with handles. The handles worked great! I also let her try sister’s water bottle and then bought her one like it. It has a loop that attaches the top; she hooks her finger through the loop and gets it to her mouth. K has never asked for a drink other than when we are at the table, so I have been trying to give her the cup and water bottle more. She drained the ten-ounce water bottle so quickly the first time. Between being thirsty and excited about her accomplishment, K has rapidly increased her liquid intake.
After the positive swallow study results, we have been allowing her to feed herself more. In the last few weeks, she has fed herself whole meals! Sometimes we help her load her utensil, but other than that, she is doing it! With practice, it is amazing how much quicker and more accurate she has become compared to three months ago. I am so glad we fed her the first 2 1/2 months for attachment reasons, and we still feed her some daily, but it is nice for her to have some independence!
Chad was recently out of town, so of course, K was in my bed. Somehow she stayed asleep when I got up with the alarm. One of us is usually still in the room when she wakes up so she is not alone. On this day, I couldn’t wait for her to wake up, so I was listening for her very closely. Normally she either has a pitiful, quiet whimper when she wakes up or goes straight to a hyperventilating panicked cry, snubbing and all. Imagine my surprise when I heard a crystal clear, “MOMMA” not once but TWICE! StP and I ran to the bed and she was leaning up and smiling, no tears.
In the past few weeks, she has been spitting out words spontaneously: get in car, book, bus, again, okay, diaper, CHOCOLATE. She is going to be talking, just listen.
Finally…FINALLY, we had her physical therapy and occupational therapy evaluations. Finally, she has started therapy. During her first therapy appointment, the therapist was showing Chad and me how to do stretches with her. First she had Kristiana on the floor and her feet were against the therapist’s legs. Kristiana loves to kick the wall, a chair, the tub, anything; for the noise, I think. Well, she started kicking the therapist and Miss Becky told her “No” in a very stern voice. Kristiana complied. After that, Miss Becky did a stretch that was very painful for Kristiana (she’s never done stretches before). I could see the thoughts running through Kristiana’s head after this. She knew she couldn’t kick her again, so she turned her head and acted like she was going to LICK HER. Krisitana loves to give kisses to us, but sometimes will stick out her tongue instead. She thinks it is hilarious, but we have taught her licking is not acceptable. I know she was thinking, “If I can’t kick this lady, I will do the next naughtiest thing I know to do…lick her!” I did tell her to stop, but I also chuckled because it was the first time she was naughty with us.
Now we have a routine of stretches to do with Little One twice a day. Some days it is very easy for her, and other days her muscles are tight and we can tell it hurts. She will stick her bottom lip out and wrinkle up her chin, but she rarely sheds a tear. I can see the tears coming and will tell her, “Just one more,” to which she responds, “Okay.” We try to distract her with music, short videos, and sibling antics, but overall she complies easily. Such a brave, determined Little One we have.
With the siblings off to school, Little One has quickly learned I am not as exciting of a playmate. It is amazing to see her playing and moving by herself, though. She crawls all over the place and then will play leaned on one arm with the rest of her body laying on the floor. This month she has started crawling to couch, putting toys on it, and then will STAND UP TO PLAY. One day I was cleaning up the kitchen and came around the corner to see her sitting up independently against the couch. Getting into a sitting position independently was huge for her. She is moving and grooving! She is also engaging in imaginative play, making noises when driving or flying toys, and making her precious Barbies “talk.” She’ll hold a toy phone and call Baba or Papaw. Playing tea party is her absolute favorite.
Although many children who have lived in institutions have sensory issues, Kristiana appears to have none. I wanted to make her some sensory boxes, anyway, so she can work on her fine motor skills. With the kids back at school, the time had come. The Dollar Tree was my inspiration. Last week I gave her three bags of pom-poms and erasers shaped like cars and trucks. I thought maybe she would play for fifteen minutes or so. AN HOUR AND HALF! She sat in her high chair for an hour and a half putting pom-poms in a bowl, digging out the erasers, scooping pom-poms with a spoon, and driving the erasers. I asked her several times if she was done, but she would shake her head “no” and keep playing. Now before you think too highly of me as a parent, I was cleaning the bathroom during this time (the highchair was in the doorway) and then I got to clean the kitchen, too. It was a win-win for both of us: sensory/play time for her; cleaning time for Momma.
The team that did Little One’s evaluation is not the team that will actually make a placement decision for Kristiana. Over the last few weeks, we have had several in-depth conversations with the school psychologist about K’s needs and our desires for her. Basically, our choices come down to putting her into an award-winning specialized day school for students with multiple disabilities or a special education classroom in a local elementary school. Each placement has its pros and cons, but our ultimate goal is for her to be in her neighborhood school learning with her peers and using whatever accommodations she needs to make it possible. How do we get her there? The psychologist, who had never met Kristiana, was hesitant that the local school could handle her needs. She suggested we visit both programs and bring Kristiana so they could meet her. We started with the classroom in the local school.
Remember the song you listened to above? Well, Kristiana took off her chains during the visit and danced her way into their hearts. We first met with the speech-language pathologist. After being shown once how to operate the toys, little K did it correctly. Understanding cause and effect–check. She tried her best to imitate the SLP. Word approximation–check. She paid attention and followed directions. Understanding of English–check.
Then we went to the classroom. Can she sit in a chair? Check. Can she attend during circle time? Check. Can she match objects to a picture? Check. I think they may have stood with their mouths open in surprise, but Kristiana is so cute and joy-filled, all they could do was smile.
It just so happened that the OT and PT were there that day, AND the PT had equipment in her car. So, the team decided to bring some in and try it. They strapped K into a walker and off she went! She reminded me of a ball in a pinball machine, running into every piece of furniture in the room. The students were in the library during this time, so all six adults stood and watched her, saying, “Watch out! Don’t run into the table/chair/bookcase!” She threw her head back, laughing, and by her second time around the room had learned to “steer.” The PT said, “I think we have a walker here.”
It was so good to hear someone say that. The doctors have said, “Maybe she’ll walk, but she’ll probably need a wheelchair.” I have been too scared to hope that she will walk and talk. She’s not scared, though. She’s breaking chains and she’s going to be soaring, all for His glory.
(Oh, and we have not had the IEP meeting yet, but they gave us enrollment forms for the local elementary school and the teacher asked if she got to keep Kristiana for the two years before kindergarten.)