Over the past couple of days the same question has come up, so to save myself time, once again, I'm turning it into a blog post. Before I begin, I will add my usual disclaimer. I am making this up. Truly. If we try one thing and it doesn't work, we try something else. Sometimes we will go back and revisit the first thing a while later, and sometimes we won't. Some days are good and successful and other days it feels as though we have taken more than a few steps backwards. But I have read (a lot) on this topic. I have spoken with a lot of other parents. And I have decided that really no one knows what to do with a child who is so significantly delayed due to such extreme neglect. Their education would have to be tailored to that specific child, and it would be a process of trial and error, so I'm doing exactly what these girls would be getting somewhere else. Read what I am doing, take what makes sense for you, and leave all the rest. Everyone's child, and everyone's brain is different.
I tend to focus on several different areas of learning: memory, physical abilities, story telling and imagination, and what everyone else thinks of as school, the academic portion, starting with academic readiness.
Without some form of working memory, learning (and life) is just a struggle, so we work on it. With H., I spent months working with her to be able to remember what she had done the day before. At first she couldn't remember anything without coaching. Then she progressed to being able to remember somethings, but not in any order. Eventually, she was able to go through her day with few problems. This was the beginning of each school day and some days this is all we were able to accomplish. With R., we haven't even begun to try the 'what did you do yesterday?' question. When a child still does not have enough language to even begin to answer that question, it becomes kind of pointless. Instead, we are working on the endless repetitive questions, such as, "Daddy come back?" I will answer it once, and then every other time, I will first ask her to try to dredge the answer out from the murkiness of her brain. Sometimes she can, sometimes she can with help, and sometimes it's just not there. On the plus, side, we get in a lot of practice for this particular skill. Because of her previous brain surgery, I fear, though that R.'s working memory will forever be compromised. The optimistic part of me, the part that hangs on to the idea of brain plasticity as if it were a life line, thinks that given enough time and practice (do I hear 1,000,000 times anyone?) that eventually this capability will be picked up by another portion of her brain. Just humor me and let me keep thinking this.
The girls are interesting in their memory differences. While H. can do the exercise I just talked about, playing a game such as Memory, is terribly difficult for her. R. can't remember the answer to a question she just asked, but can play Memory like no one's business. Go figure.
Other odd related memory activities that don't seem like memory-related activities... copying out non-Western alphabets. This is one I read about somewhere, and figured that it couldn't hurt, so H. did that for a year every day, right after our little 'what she did yesterday' session. I cannot tell you whether it helped or not, but eventually the two activities did allow her to remember the previous day. (I'm a bad, bad scientist for combining two variables into one problem.) The other thing is balance. There is a lot to suggest that the better a child can balance, the better their memory will be as well. (This also seems to be true for the aging population as well, so don't laugh if you see me walk across the balance beam in my kitchen every now and then.) Which brings me to...
A child (assuming there is not a medical reason they cannot) needs to be able to know where their body is in space. They need to have confidence in their movements. They need to know where their bodies stop and start. Our neural system does not end at the bottom of the brain, but our brain function is completely and totally connected to the rest of our bodies. If a child does not have any idea where they are in space (vestibular awareness) or where their bodies stop and start (proprioception), they are going to have difficulty learning. So we work on physical abilities... balance, hopping, crawling, skipping, spinning, walking backwards, jumping, walking on toes, heels, and heel to toe, and more. When H. first came home, she walked and moved like an ancient, vision impaired woman. As she became more comfortable with her body, her movement... and her mental focus... improved. Any activity that crosses the child's midline and especially if that activity uses both sight and movement, is going to stimulate the child's brain. Swinging on swings, playing chase, and throwing and catching balls really are as vital to any child's intellectual development as learning the times tables and phonics.
Story Telling and Imagination
This might seem to be out of place here. Surely the ability to create a story is not nearly so important as being able to do other things, say, read, for instance. I would disagree, particularly for our children who are not only intellectually delayed, but also have a trauma background. Being able to tell stories, to control the story line, to make-up alternate endings is a vital human skill. Stories are the basis of our lives. It's how we remember things. It's how we communicate. It's how we solve problems. It's even how God chose to communicate with us. Listen to people talking together. When it comes right down to it, much of general conversation is people sharing stories.
There is a reason fairy tales are so universal and long lived... they tell us important things about our culture and our lives. They are not static and are constantly being changed to meet the current culture, but they are still there. Without the ability to understand and to tell storied, I believe our children are impoverished. It can also leave them stuck in their trauma. Let me share a little from a book I'm currently reading. "But Noam's experience [a little boy who ran with his family away from the falling towers on 9/11, and later, in the safety of his home drew a picture of his experience, including a trampoline so when the people have to jump the next time, they will be safe] allows us to see in outline two critical aspects of adaptive response to threat that is basic to human survival. At the time the disaster occurred, he was able to take an active role by running away from it, thus becoming an agent in his own rescue. And once he had reached the safety of home, the alarm bells in his brain and body quieted. This freed his mind to make some sense of what had happened and even to imagine a creative alternative to what he had seen -- a lifesaving trampoline." (pp. 52-53 of The Body Keeps the Score by Bessel van der Kolk) While most children imagine spontaneously, our delayed children may need some help.
So how to help? Well, I start mine out by just telling them fairly tales. I usually just start with one. I want them to work on remembering it, and not get confused by too many stories. I read different versions of the fairy tales, and then I help the child act out the fairy tales in different ways. We have a flannel board, I've made cardboard stick puppet, I've purchased lovely 3-D sets. We do this over and over and over. R. is still at the very beginning stages of grasping story. She likes to listen to them, and she can identify the characters. H., on the other hand, after nearly five years of this, I discovered is now able to play out the story of the fairly tale on her own. We are still working on imagining different endings or new stories, but she has really made progress. We learn to create stories from having heard stories.
[If this interests you, I have a few other blog posts on the same topic: "Is Your Bed Still There When You Close the Door?" by Jane Healy; Story Telling; How Pictures Work)
Finally, we get to what everyone thinks of when they think 'school'. But hang on, there is so much that has to be in place before phonics, addition, and subtraction can be tackled. First some questions need to be answered. Can the child trace a line? Can the child copy a simple shape... such as a line (or circle or square)? Can the child copy a pattern? Can the child figure out the next item in a simple pattern? Can the child count? Does the child understand that each of those numbers corresponds to real things? Do they have experience with text? Can the child put a book the right way up? Can the child follow simple instructions (stand up, sit down, wait, stop, etc.)? Can the child identify colors? Can the child identify other people's facial expressions? Can the child mirror those facial expressions? Can the child put beads on a string? Lace? Unstring and unlace? Cut? Follow a line while cutting? I could go on, but you get the idea. This list comprises essential academic readiness skills. If any of these are skipped or missed, later learning will be compromised. Start here. Start here no matter the age of the child. R. can do very few of these things, so this is where we are beginning. It would be pretty darn pointless to try to teach her anything remotely associated with her age at this point. She would happily parrot back answers as best she could, but there would be no learning happening, except perhaps that learning is watching the teacher's face to best guess at the desired response.
If the child can do these things, then it is time to move on. Slowly. The most important thing I've found is not a particularly curriculum, but the ability to break down each skill to its most basic steps and teach that skill a step at a time. Let's take adding for instance. First, the child must know that the numbers mean something, that they represent a specific amount, and that the child can count out that amount each time, moving the item from one pile to another. Then the child needs to practice counting out one pile of somethings, and then moving on to counting out a second pile of somethings. (Trust me, this is not always as straightforward as we would like to think it is.) Finally, once these two skills have been mastered, the final step is to combine the two piles and count it all out again for the answer. Once these skills are mastered, then learning how to write out the problem and answer is the next step. Often times I find that most curricula do not break things down quite enough, or give enough practice of each individual step, so I end up using the curriculum for a broad outline and tweaking it considerably. This is why it is so difficult when people ask me what curriculum I use for my more challenged children.
Really, there is no short answer to how to teach a child with intellectual delays. Each child is different, with different strengths and weaknesses. Each child has their own unique potential that we cannot know in advance. Our job is to be a student of our children. To watch them carefully to figure out what they know and how they think. Because our children are different, we cannot be reliant on premade curricula which cater to one 'average' child, but since there is no such thing as the 'average' child, actually serves no child completely. We must be willing to try different things, to experiment, to switch gears when needed, and to not give up. Our children are on a different time table than most. They may not be done learning the basics at 18... or 19 or 20 or 21. But that is okay. We have time. We have all the time our children need. We don't stop being parents when our children turn these ages. We do not have to move them out of our homes when they turn these ages. We can choose a different path. And remember, different is just different. It's not better or worse. So get rid of any time table that you think a child 'should' be learning on, and focus on what they are doing now. Remember to celebrate their successes, because often time they come as a result of far greater effort than most other children's. Remember they are children first, not a diagnosis or a label, but a beloved child who is just right as they are.