Wednesday, March 29, 2017

Oops, the Butterfly Is NOT Dead

While mowing the lawn two days ago, I found an injured butterfly. Part of its wing was missing so it couldn't fly and it's body looked a little damaged, too. I made it a nice home in our big glass bowl and watched it. It didn't move much and today it didn't move at all, even when I touched it and moved it, though I thought I saw a leg twitch once. Guess I did, because a few hours later, after telling the girls that the butterfly was dead, it was opening and closing its wings!

How many lives to butterflies have?

Update: April 4
Our butterfly is now truly dead, but it lived seemingly happily in our big glass bowl, eating nectar from plum slices and exploring most of its habitat.

6 Years Home

Yesterday was Jie Jie's Family Day anniversary. It's been 6 years since her adoption. Her orphanage sent us a Chinese New Year card. It's been a great comfort to her and me, too, that she is so loved by those who cared for her, including her birth family (we know this from her finding note).

Saturday, March 18, 2017

Real Life and Cognitive Delays

In my last post, I published the following comment: "I think its a positive thing for Blossom! Not to worry:) it's good to be exposed to all different kinds of people and relationships. It's not something that cm be avoided in the real world. And who knows, maybe she will be able to identify with them and find comfort in that:)"

I have found, as have many parents with children with cognitive delays, that these types of experiences are not usually positive for our children. Here's why...

For a neurotypical child, exposure to all different kinds of people, relationships, ideas, etc... is normally an experience that triggers growth and development. When exposed to something new, questions are asked, discussions ensue, and over time, the knowledge gained by this process is used by the child in how they conduct themselves and how they form their own choices, beliefs, and it's a step that leads to another step in normal development.

For a child with low cognition, it can be confusing, scary and frustrating. In Blossom's case, and the case of my other two older girls, first, they don't have the capacity for speech and language enough to understand a large portion what they see and hear. Second, they can't express themselves verbally in order to have a meaningful discussion about it. Third, they can't process the information correctly since they can't draw on or build on past experiences. Essentially, knowledge and information they are exposed to doesn't accumulate.

For example, would you let a 6 year-old watch a rated R movie? No. Why? Because the concepts are beyond their comprehension, may be scary, etc...

So, when you have an adult or teen with the cognitive level of a 6 year-old, you don't let them watch R movies either. Even physically, if you have a 16 year-old with the fine motor skills of a 4-6 year-old, would you let them stir a boiling pot of food on the stove? No. Would you let them pour dry ingredients into a bowl and crack eggs to bake cookies? Yes, with appropriate supervision.

What I find most people don't comprehend is that it doesn't matter how old my girls get, unless a divine miracle or miracle of science happens, their ability to use their intellect is never going to get any better than it is now. They can learn new things, but they can't use the knowledge at any level higher than they comprehend it and most is forgotten in very short time. Therefore, they don't develop further without a ton of support, hence independent living programs for the disabled which really means, as independent as possible, or, even more true, with as much assistance as they need.

Sissy, now 18, reads words at 3rd-4th grade level (with great effort) and comprehends what she reads at barely 2nd grade level, if that. This is after 3+ years of speech therapy, which has now been cancelled due to a lack of any improvement at all. But, it did help her learn the English language a little better, as it should since she's been here nearly 5 years and speech therapy was very targeted. Unfortunately, the improvements are in written BASIC sentence structure and spelling, not speaking or understanding, and the writing takes her a VERY, VERY long time. However, there has been no improvement in her ability to comprehend WHAT she reads any better.

So, in the instance of Blossom's evening out, she comprehended so little of it, that she found it a bit boring and it's already forgotten. This is a blessing, because sometimes when she's exposed to something that resonates with her a little more, but is still elusive to her comprehension, she has days and days of questions, often the same ones repetitively, and it's a source of stress to her that she can't figure it out no matter how hard she tries, or she gets the concept very wrong and can't understand how wrong.

Sunday, March 12, 2017

Getting Through Church Services

We've still been going to church. All of us. To all three hours of church. It's not easy, but it's been doable.

I figured something out. It's what I do at home to keep the girls positively occupied and productively busy.

I have been printing out bible-themed worksheets for them to do during Sacrament Meeting, the hour and ten minute part of the service that is our church's main worship service and the hardest part for kids to sit through.

I have word searches, cross-word puzzles (easy ones), mazes, and for my littlest one, coloring pages. All are gospel-related. There is so much available for free online!

Something that didn't work very well was letting Blossom join this past week's youth activity. Three of the girls in her youth group were in a school musical and the activity was to go see the performance. I agonized, but with the assurance that the youth leader would give Blossom the level of supervision she needs, I agreed to let her go. Blossom was picked up at 6:45pm and got home just after 10pm looking weary and a bit dazed and definitely NOT looking like she'd had a good time. The youth leader started apologizing to me right away.

Apparently, the musical was much more "out there" than she'd realized. It was an Elvis music theme and was about romantic relationships. One "relationship" theme was that of a girl who dressed up like a boy to be close to the boy she liked and he fell for her, as a guy. Definitely not the message I want to give my children. In the end, the relationships and genders "all straightened out," according to the youth leader, but she knew it wasn't the best thing for Blossom to have been exposed to or even for the other girls in the youth group to have been exposed to. Thank heavens, it seems to have been confusing enough not to have made much of an impression on Blossom, but I can't know for sure. She hasn't talked at all about it other than to say she knows why I don't usually let her go to things like that and that she felt weird being there "with all those other kids."

Next time, I'm going with my gut instinct rather than torture myself trying to "let go" more. I'm often torn because it's hard to know what mainstream experiences they should have or can even benefit from. What I'm learning, is that the older they get, the less mainstreaming they need because they are further and further behind their same age peers since their development has peaked (Jie Jie has a little more developing to go still). What they do need are more activities with others with special needs, but it's hard to find such things.