31 for 21: My Answers

There were a couple questions left in my questions post, and one on another post, that I'm answering on this last day of 31 for 21.

1. What is Kayla's opinion on being featured on the internet?

This is kind of hard to answer because I don't think she quite grasps the concept of 'internet' and what it means, exactly - and that other people are reading this 'blog' that I write. She knows of "Big Blueberry Eyes" so I asked her what she thought of the pictures that are on here and she said, "Happy!" I asked her why that makes her happy and she said, "Because I love you!" When I started this blog she was just shy of being three years old. I had a "family website" that I made as a way to let family and friends see what we were up to (being a military family we didn't live close by to family) and also as a sort of online journal; I easily transitioned from that early experimentation of a website to a blog. I think this was before all the ethical questions really started about blogging about your kids and by the time those questions really started to be asked, after blogging seemed to take off, I was already in the thick of it. I try to blog mostly from my perspective of being a parent and I try to be conscious of what I post - nothing embarrassing or anything I know I wouldn't have wanted put out there about myself at that age.

2. I'd love to hear more about Kayla's educational program. What is her classroom like, and what are her favorite subjects? I would also be interested to learn about Kayla's language development - has speech always come easily for her, or what strategies did you all use to help her succeed? And at Kayla's age now, is she involved in any therapies like PT/OT/SLP?

Kayla is in the 6th grade (junior high!) and this year we withdrew her from the public school system (they wanted her in a self-contained classroom for every class except her two electives of PE & Band) and enrolled her in a private school with an inclusive education program. I would compare this program to being like a resource room in a public school. When she was in elementary school she went to ged ed classes and went to the resource room for some ELA/Math instruction.

At this school she goes to Science, Social Studies, Literature, Religion, Spanish, Music, Art, and PE with all of her peers and she goes to the 'resource room' for 40 min of Reading/Writing and 40 min of Math. She switches classrooms with her peers and has a locker; this is her first year without a 1 on 1 aide and so far it seems to be going well - she goes to the resource room and back to her classes independently and knows her schedule. She isn't doing the same level of work as her peers, but she's included in the class discussions and has modified tests/work on her level. We think her favorite subject is Science because she likes the hands-on experiences, but she also says she likes reading and math (although she struggles in both areas, so I don't know about that!).

I don't think Kayla's speech has come easily - when she was 3 she was still mostly talking in one-word sentences. She could say a large number of words, but rarely would put two of them together at one time. I remember one night when Joe came home from work and she said, "Hi Daddy!" and it was such a big deal that she said the two words together. I still think she struggles with speech - she might speak better than some kids with Down syndrome and conversely there are other kids with Down syndrome who have much better speech than she does. Her biggest issue (or what I perceive to be) is she mostly talks in phrases instead of complete sentences (and some of her enunciation still isn't clear unless you know the context of what she's talking about). We try to correct her in saying all of the words in a sentence, but I know she gets frustrated with being corrected. I can't recall any specific strategies we used - she did start ST when she was about 8 weeks old through Early Childhood Intervention.

When she was in the public school system she had all three PT/OT/ST until we moved to Maryland halfway through her Kindergarten year. In MD she didn't qualify for PT, only adaptive PE. When we moved to SC they didn't have, nor knew what adaptive PE was, so she only received OT/ST in school. In her private school she is still receiving ST, but they don't have OT services there.

She was receiving ST through our insurance outside of school the past few years, but they recently discharged her saying she met the goals and there was nothing more they could really do. My concern was she still has tongue thrust when she's drinking/eating/swallowing and her legibility and sentence length (mostly being phrases) but they said she wasn't doing that so much during the speech sessions. I think because it was a controlled environment and she knew what they were going to work on and practice on during ST; it's not the same as when she's around her peers just talking. We have a new referral and I'm going to try a different location to see if they have other suggestions.

3. Has Kayla expressed an interest in a particular area of study/employment?

This is another area where I think the concept is a little hard for Kayla to grasp when talking about the future or what she wants to be or do when she grows up. A couple of years ago she would answer the question with being a princess, or more specifically she started saying Elsa. I would try to explain to her that is a character in a movie and not something she can be when she grows up. I tried to explain what answers people give to that question like, "a teacher, a doctor, etc" and she said "A doctor!" That answer surprised me because she hates anything medical, but also trying to be reasonable with expectations, because she isn't going to be a doctor, I tried guiding her to something like a "doctor's helper" - someone who helps calms kids when they go to the doctor so they won't be afraid. She liked that idea and now will answer "doctors' helper."

But the more I think about it, why can't she decide she wants to be Elsa? She loves to dress up. She is drawn to younger kids. I can picture her being an Elsa character at Disney - she would totally be in her element doing that. Dressing up, playing the part of a character, and entertaining little kids? That is so her. And who fills those jobs of dressing up as characters at Disney? Adults. So why can't this be an answer to that question of what she wants to be? I just need to think outside the box.

Even closer to home, here in Charleston, there is a boutique called Princess of Tides and the adults that work there participate in all kinds of events dressed up as Disney princesses. She could be employed doing something like that!

Thanks for the questions to wrap up 31 for 21 and thanks to all the bloggers for participating!


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