I’m not sure if anyone reads this blog much anymore, but I’m going to attempt an update of Kellin’s progress anyway. It’s been six months since I wrote a thorough update.
We’ve had lots of exciting steps forward for Kellin! One of the most exciting is that over the summer, Kellin has pretty suddenly shown a significant increase in weight. You know that weight gain has always been a concern for us, and we’ve really struggled to get him to eat enough to put on pounds. However, in June, we started feeling like Kellin looked chubbier, and he felt heavier when he picked him up. So in July, I took him in to be weighed and discovered that he had gained FIVE POUNDS since his last weight check (only a month earlier), and was over 35 pounds total. Now of course this is still very small for an almost-six-year-old but for Kellin, it’s huge! He is really starting to look healthy. He’s got chubby cheeks, and a little roll on his belly. It’s adorable!
The strange part is we really don’t know what caused the weight gain. He’d been eating a little better but not significantly better, and he was still throwing up on a fairly regular basis. It might have been partly because we introduced a new food - “peanut butter cereal” (cream, peanut butter, brown sugar, and baby rice cereal mixed together) - that he seems to enjoy and it’s packed with calories. Or it might have been because it’s summer and his stress level is lower without school. Or it could have been a combination of factors, or something else entirely; in any case, we are THRILLED!
In terms of eating, we’re still pretty much in the same place we were. He eats his pureed food and his crunchy finger foods, and he drinks his juice. He still needs prompting to continue to eat or he will sit at the table and stim or hold food in his hands without eating it. Although he’s eaten occasional bites of different foods - raisins, cheese - he’s still pretty stuck on the same foods. The one positive is that he is happier at mealtimes. He fusses much less often and goes through many whole meals without fussing at all.
Our other big news is that Kellin is POTTY-TRAINED! He’s been in underwear since May, even overnight, and he’s doing amazing! He doesn’t tell us he needs to go, but as long as we take him regularly, he stays dry most of the time. He has the occasional accident but nothing too out of the ordinary for a newly-potty-trained child. And he’s been dry every single night since we put him in underwear. This is something I didn’t expect he would be developmentally ready for yet, but I am so glad.
So let’s talk communication. No, Kellin still isn’t talking. :-( It’s not from any lack of trying on our part, that’s for sure. He has a mixed bag of communication techniques to let us know what he wants. Several months ago, I made a tactile request board for him. I took all his favorite toys and put them away in another room where he couldn’t find them. Then I assigned each toy a texture (I went to a craft store and bought all kinds of materials with different textures). I created a tile for each toy with the texture and the Braille word on a small piece of wood. Then I attached the same texture to each toy. All of the tiles were velcroed onto a board on the wall in Kellin’s play area. Then we began to teach him that when he wanted a certain toy, he needed to find the corresponding tile on the board and bring it to us. It took several weeks, but I think Kellin caught on pretty quickly, and he will now walk to this board, scan it with his fingers, and choose the tile for the toy he wants. He’s pretty good at it!
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| This is the tactile request board. |
He uses a few gestures - signs “all done,” nods his head to indicate yes, takes Daddy’s hand and pulls him to the sink to indicate he wants to play in the water, and has developed his own little sign that seems to mean “no.” He uses sounds to communicate as well, but still mostly says “mama,” “ma,” or “ah” to communicate everything. Sometimes he’ll kind of imitate a “ha” sound. We’ve heard a couple of new sounds emerging lately - an “nn” or “nana” sound, a sort of “t” or “ts” sound, and a “dada” sound. He only uses them randomly though, not when we ask him to imitate them. He still resorts to crying or whining a lot of the time when he wants something. Although we’ve started to prompt him by saying, “Whining doesn’t work” and he will often stop crying and try to communicate another way.
Receptively, Kellin understands so much. He follows one-step directions (and occasionally two-step, but it has to be a familiar direction with two related steps like “take off your shirt and put it in the basket”). He understands when we tell him what is happening next, like going in the car or taking a bath. I can tell him when he’s getting down from his chair at the table to head up to the bathroom, and he will get there (all the way upstairs) by himself. He also seems to remember these directions for a while. Sometimes when he’s on his way from one part of the house to another, he will get side-tracked by sunlight or by tapping on something, but even after several minutes, he can get back on track and remember where he’s supposed to be heading.
We are continuing to work on communication in any way we can. We try to make him communicate for EVERYTHING, whether it’s with a sound, gesture, or with his request board. But still, the progress is very, very slow.
In terms of cognitive kinds of skills, Kellin has made some good progress too. He has mastered several sets of simple sorting materials (bumpy/smooth, blocks/balls, hard/soft) and has nearly mastered big/little. I had been trying to work on matching with Kellin several months ago with cards with different textures on them, and it just wasn’t working. So this summer I tried something different - 3D materials that allow him to feel the differences just by picking them up. And it’s been a huge success! Most of the sets use different kinds of balls (bumpy sensory balls, ping pong balls, cotton balls, styrofoam balls) that he can easily feel as soon as he has them in his hand. For each task, I put three baskets in front of him, with all the materials in the middle basket. All he has to do is pick up an object and place it in the basket to the right or left. He whizzes through them now, so I am starting to work on awareness of the concepts of “bumpy/smooth, hard/soft,” etc. by asking him to show me the “bumpy ball” or “soft ball.” He doesn’t have this mastered yet but I believe he will.
I’m also working a lot on counting with him, but always 1-6 in the order of a Braille cell, which is 1, 2, 3 from top to bottom on the left, then 4, 5, 6, from top to bottom on the right. We use a six-hole muffin and tin and practice counting the holes in order and then placing balls into each hole in order. My hope is that eventually, we can form a Braille “a” by placing a ball in the first hole, form a Braille “b” by placing balls in the first and second hole, etc. He’s pretty good at putting the balls in when we go in order, but we haven’t tried out of order yet.
There a few other tasks we work on too. Summer is really the only time I have the time to work with Kellin each day, so I try to take advantage of that. He’s become much more cooperative and will sit and work with me for 20 minutes or more with minimal fussing. This is a huge step forward. In the past, he’s been so resistant to any sort of therapy or “work” tasks.
Kellin is much more independent with moving around. He moves easily around the house, and he has mastered getting from the house to his seat in the van in the garage (and our garage is not attached to the house, so he has to navigate between the buildings also) and from the van into the house when we arrive home. He uses the slide on our swingset independently - climbing up, sliding down, and then trailing along the slide to find the ladder to do it again. It’s pretty fun to watch. He is using his cane more deliberately and actually seems to use it to get information. If it bumps something, he knows to adjust his path or to prepare to step up or down.
Kellin will enter kindergarten this year, which I have mixed feelings about. He is turning six soon so it’s time, but he still seems so little. On the other hand, he attended summer school at his new program and did very well there. He will be attending the same elementary school as his two brothers, which makes me very happy. He’ll have some time in a regular kindergarten classroom but will also spend a lot of time getting more individualized instruction in a special education classroom. I think this is a great fit for him and I’m excited to see what he can accomplish!
As I am a true special education teacher at heart, I always have goals in mind for Kellin. Currently, these are the things that I am hoping he will learn to do within the next several months or year:
Use eating utensils independently
Use two hands together, especially when he needs to use one hand to locate where something needs to go and use the other hand to place it there - a very important skill when you can’t see
Isolate one finger to point at or touch something
Use his thumb to help his fingers grab things (for example, when pulling up his pants, he still often just uses his fingers while his thumb sticks out doing nothing - especially on his left hand)
Talk!!! Or at least communicate more functionally in some way
Initiate the next step in routines without being told (for example, right now I am working on getting him to pull up his underwear and pants, and then walk to the sink after toileting, without being prompted - often he will just stand by the toilet with his pants down until I tell him what to do)
Start to recognize some Braille letters and form them with manipulatives
Get through his school day without too much fussing or screaming; cooperative in most work activities
Start to learn how to orient his clothes to put them on (currently, he only puts them on correctly if I lay them out in a specific way or hand them to him the right way; if they are not just right, he has no idea what to do)
Tolerate and chew a greater variety of foods
I think that’s enough about Kellin for now, probably more than anyone really wanted to know. :-)
As far as the other kids - they’re doing great! Pooh is taking tennis this summer and LOVES it. Tigger tried archery and is thinking he’d like to take some more classes. And Rabbit has been spending hours on the trampoline - I’m amazed watching her jump and flip around out there! And of course, they all LOVE to get out there and swim! More details about them later, but here are some pictures.
