Fudge will be 9 this fall, I try really hard not to compare him to his brother and other kids his age but it is really hard not to notice the huge deficits that he has. He struggles socially with other kids and his fine motor skills are still very poor. He gets easily frustrated by little things that other kids his age have mastered and he often makes jokes and comments that would be funny to kindergarten crowd but not other kids his age.
One of his biggest frustrations lately has been with his inability to recall information, it is almost as though his brain is a filing cabinet and the clerk is misfiling things while he is not looking. A few days ago we had a conversation that went something like this,
" Mom, let's make the race track look like a candy, a candy, a candy"
" A candy what Fudge" I said looking up from the lego track that we were working together.
" You know one of those candy things"
" What kind of candy things?"
" The curved ones with stripes, the ones we hang on the tree at Christmas"
" Oh you mean the shape that curves at the top and has a long straight part?"
" Yes, one of those. What are they called again?"
" Let's see if we can figure it out together, what else could you use something that had a shape like that for"
Fudge was silent
" It can be something that you walk with when you have trouble moving around."
" Oh, a stick"
"No Fudge, a stick is straight, this is a special stick that has a curved top where you can put your hand"
Fudge can not recall the word, he is getting frustrated that I will not tell him the answer. I provide some more prompts trying to find the right clue.
Then his face lights up "a cane, a candy cane."
"That's right Fudge, sure we can try to make our track look like candy cane"
I struggle with when to just fill in the blanks for him when he is unable to find a word and when to try to get him to recall the word on his own. It is a fine line between helping and hindering. I want Fudge to learn to find the missing words on his own but at the same time trying to locate them is so frustrating for him. It is the same for many things in his life, he struggles with things that would not be an issue for many other kids and I struggle with when to help.
We recently got the typed report of his recent neuropsych evaluation and the Clinical Neuropsychologist who did the testing including the following paragraph in response to some questionnaires that we were asked to complete about his daily functioning in the home.
It should be noted that Fudge's low scores on the areas assessed by this measure are thought to be artificially low, in that his parents have taken the tack of doing many things for him to reduce the stress on him rather than to his inability to complete these things. They were encouraged to allow him to explore and complete more activities on his own to increase his level of adaptive functioning and, eventually, his independence.
I was really struck by this one paragraph because as his mother I not only have to watch him struggle with tasks such as tying his shoes but I also have to gauge when he needs assistance and when to let him struggle. It is a delicate balancing act. There is no right recipe for each kid and every family has to decide for themselves when to step in and assist their child. I was struck by the fact that the Neuropsychologist would find that this meant that we were stepping in to frequently, if anything I would say that opposite is true. I have had other people who work with us watch him struggle and just jump and then question my motivations in not stepping in sooner.
I have no answers, just more questions but I do know that I am not the first mother to struggle with this issue and nor will I be the last. I would love to hear what other parents do to find the balance between helping and hindering their children as they struggle for independence.
J writes at Stellar Parenting 101 where she talks about the challenges and joys of raising children through older child adoption who keep her running till her head hits the pillow at the end of the day.
Our son is nine, and joined the family last year. The biggest thing I notice when I compare (even though I shouldn't) him with my younger birth children is the lack of independence. In his case I think it drives directly from a lack of self esteem, rather then ability. He wants us to help him, as that means to him we care. We talk a lot about how because we care, we're getting him to do things himself. That it would be cruel not to prepare him for being a capable adult. So no I'm not making your toast, or cleaning up your mess, or picking up your laundry, or looking for the sweater you lost (that I can see right behind you). I'll help you, if you ask, but you better be making an effort as well. If you don't do it, then you have feel the consequences (hum, you're out of clean underwear? What can you do about that?)
ReplyDeleteWhen we come to areas where he has additional issues (expressive language, comprehension, writing), we ramp up the cueing and repetition. Every night reviewing his best and worst things of the day, quizzing him about the story after he reads his homework, having him read his writing after he finishes to make sure it's in the right words. He doesn't like any of that, and would just prefer to ignore it altogether. And when the end product matters more then the process (i.e. "homework" for sports, or writing letters to his birth brother) we'll let him dictate and we'll take it down.
We're also finding ways to show him that he can be capable. He's responsible for cooking supper once per week. He plans the menu and then makes the meal. I stand by to help, prompt and do some of the things that I know he's worried about (like pulling things out of the oven). Then we all sit back and proclaim that this shake and bake chicken, or kraft dinner, or whatever, is the best that we've ever tasted.
Oooh....the quote from the evaluator gave me a funny feeling before I even finished reading your post. I think the best thing about the quote is that the person is one of the few who knows the definition and spelling of "tack."
ReplyDeleteI would hope for more helpful, more specific information about what tasks are not working in his brain, where to learn more about them, and different current thinking about rehabilitation of those functions. For instance, when you described the trying to help him arrive at the word "cane" on his own, I instantly wondered if there was any research on time lag when a person cannot come up with a word. So, what are the consequences of having an adult quickly say "cane!" while the brain is still in a certain processing aspect, vs having the child's brain enter a different sort of processing while working in question/answer with the adult about how to deduce the word. Those are two very different tasks and accomplishing one may not improve the other.
It sounds like you are so conscientious about working with Fudge. Let the neuropsychologist take him for a week and see if he can get anywhere punctually having him tie his shoes independently every single time!
At risk of criticizing without having seen the whole picture, it seemed that this professional took the easy way out of blaming the family for the disability. Perhaps some professional out there will suggest specific ways to improve the current situation based on knowledge of brain function. Wishing for that for any of our kids who need it!
"There is no right recipe for each kid and every family has to decide for themselves when to step in and assist their child." So true.
We have a friend who calls this "just right help" - giving just the right amount of assistance so the child feels supported but not so much that the parent takes over because it's just faster or easier or less stressful. There is a time and a place for everything is my motto on this. My daughter recently mastered tying her shoelaces, but it takes about 10 minutes for her to do it herself. If we have to be somewhere in 10 minutes and she's just getting started, well I kind of have to help her. If I've managed to get her started early enough or if there's no firm deadline then I let her muddle along. But it is hard to decide sometimes...so I think you have to go with what feels right for you and your child. Your example conversation would have been a show stopper for my kid. I probably would have prompted with a beginning sound, but even that can be too frustrating for her, but for you and Fudge it worked...and he had the triumph of pulling the word out of his filing system. Bravo, I say!
ReplyDeleteI think your evaluator was wrong
ReplyDeleteI read your blog and its failrly obvious that u r doing a great job of nurturing both connection and independance
Having recently had our own experience with neuropsych evals, I can only say this:
ReplyDeleteI think the evaluators are stuck trying to piece together an incredibly huge tapestry whileonly holding onto the end of one strand of thread. They can't possibly see all the colors, textures, and nuances of your life with Fudge. Consequently, those evluators so often get it wrong. TERRIBLY wrong.
What you've described in your vignette in this post isn't "stepping in" at all; I see it as teaching Fudge to think and reason for himself. A far more critical life skill, for sure!