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.

1 comment:

Anonymous said...

Well said, K. I am on the exact same page with two of my girls, and it can get old trying to explain to people why I do not let them participate in activities with typical teens close to their ages. I am sure that I get judged regularly as if I am holding them back instead of showing them the kindness of protecting them from things that confuse and may potentially alarm them. Certainly from things that set them off and make them behave in ways that are embarrassing for them, even if they don't realize it. Who would knowingly place their child in a situation where they will be mocked behind their backs? This is a lonely road at times for sure. Keep up your courageous work. No one will ever know your children better than you do. Blessings.