Communication, Eating & Potty Training

Remember I promised proud moments of Ainsley too after this and this post? Well I'm going to try my best. I've got dinner in the oven and Ainsley is watching Pingu. Have you seen that show? My brain can't think with it jabbering in the background. It's amazing how much can be communicated without words(the show talks in Penguin language). Still, body language can only get you so far and real words are useful. In some ways my life is like trying to interpret a Pingu episode. It isn't easy to have a child who can't communicate with words. Seriously. Try it. Ask your child (or someone close to you) to not speak and it won't take long before you see how challenging it is.

We've been working on alternative modes of communication since Ainsley was a baby. Sign language, we tried PECS cards, and then we moved from a simple button to more and more complex electronic communication systems. There was a time when Ainsley could hardly push a button. Even now there are times that her hands aren't very steady. I think it's an effect from her cerebellum malformation that will likely always be there. It requires some concentration on her part. Some times of the day she does better with her communication device than others.

Despite the physical, the real obstacle we've faced, I believe, has been cognitive. She just wasn't "getting it". This is a common problem with Ainsley. She is quite smart in certain ways. That can be confusing to people who work with her (like therapists, teachers and even family and friends). We work at something but the progress can be so slow and it really seems like she should be able to do it (whatever the it is).  I work with Ainsley on so many different areas, have for many years. Even I often don't understand why the progress isn't faster and I know how much effort I'm putting in.

I think it's kind of like trying to teach a 3 year old to write. They aren't ready. Some days they hold the pencil well and can form form letters. On those days so you think they can do it, other days they can't even seem to hold the pencil and letters they've written in the past may be written backward or they can't remember how to make certain letters. In those moments it's obvious the child is just not ready for fluent writing like they are ate age 5 when they get to Kindergarten. The difficulty is that with a developmentally delayed child, you don't know when the "right moment" is.  You can't use normal developmental stages as a guide. There is no manual. It can be very frustrating.

Sometimes it takes finally getting to "the right moment" to see that all the previous moments were "not right". I see that in so many different areas with Ainsley. The three I want to mention today are communication, eating and potty training.

Ainsley has been taking her NovaChat 7 to school for the last couple weeks, because I believed we are at that moment.....and yet. When I sat down to video tape her using her device for this post she had a difficult time. Unfortunately I didn't get all the videos I'd like to share. I'll have to post those another time so they are all in one place for the people who read my blog whose children use AACs.

On the positive side, a very proud moment came last week when after school Ainsley brought me her communication device which, she'd pulled out of her backpack, and asked me (with sign) to help her open the bag so she could get it out.  Then she used the device to tell me that she wanted (tortilla)chips for her snack. She sat down and ate them and then used the device to ask for yogurt which she also ate! It's a HUGE step to seek the device out when it isn't around to use it to communicate a full desire like that. It's empowering and likely to encourage further use which is what we want. Until she has a voice of her own, this IS her voice, and we are trying to give her 24/7 access as much as that is possible.

Look how pleased she is with herself!

 

In addition we've been using the device when I work on feeding with her after dinner. The page has words that describe food. It's been helpful. She can tell me how it tastes, if she likes the food or not, if it needs to be warmed up, she wants a drink, or she is full.

 

I've been trying to puree the table food that she doesn't eat at dinner. I'm getting better at making it palatable. Mostly by using water instead of milk to thin it and adding additional ingredients to round out the taste of the mix even it has less calories. This was chicken in mushroom sauce, mixed wild rice, broccoli and cauliflower.

 

This was pizza with some added pizza sauce and cheese.

 

She will now use her communication device to ask me to warm up the food if it gets too cool. It takes her a long time to eat so often we have to rewarm it several times.  It's so helpful that she can now communicate this. She is more likely to gag if the food is too cold.

The feeding is going well but it takes a lot of time. Time that I'd rather be doing something else. I feel like Evie and Adrian get shortchanged. (Sometimes I cry as I tuck them into bed when yet another day has gone by that I feel Ainsley got the bulk of my attention. Though it's just as big, if not bigger problem, that my husband works such long hours.) I always hope that the work I do on skills will pay off and eventually lead to more free time. My goal is to eventually be able to stop tube feedings, or at least cut back to one tube feeding per day (plus water to maintain proper hydration). It will take a lot of effort to get there, but hopefully it will be worth it in the end.  Similar to how it's been with.....

 

Potty training. Another area that I've spent countless hours working on in the past with little results. Near the end of 2012 I started to sense that it was the "right time" and she was really ready. I blogged about this in January, that we made the switch to training underwear. I'm happy to report that she's still in them during the day, every day. Not only that, a couple nights ago she got up from the dinner table (I was giving her a chance to eat the puree by herself before finishing spoon feeding her myself) and crawled into the TV room to sign that she wanted me to take her to the potty. Accidents have become less frequent. SHE IS DOING IT! On Valentine's Day it will have been an ENTIRE MONTH in underwear and I think that will make it official THAT SHE IS TRULY POTTY TRAINED!

 

Speaking of Valentine's Day have a good one! I hope you are sharing the day with those you love.