Thursday, February 25, 2016

Communication Breakthrough (PODD system)


Recently, Maddy’s school got a PODD system. It stands for: P- Pragmatic= the way we use language socially O- Organization= the arrangement of words and symbols in a systematic way DD- Dynamic Display= the changing of pages. *Source (http://www.myeasybee.com/blog/podd-intro/) For those that don’t know, Maddy is non-verbal. She doesn’t use words to communicate the way you or I do. We (both at home and school) have tried other methods of communication, such as sign language, a PECS (picture exchange communication system), etc. While the PECS is similar to a PODD system, the difference is that with the PODD system, all the pictures are arranged in a book by category according to how we would speak in sentences.

Maddy started using the PODD system at school right before Christmas. Shortly after the holiday break, we had an IEP meeting and discussed the new system among other things. Her teachers were all very excited to talk about how fast she was adapting to the book and how she’d already begun to use is on occasion on ask for something.

After the IEP meeting, school began sending the book home. The hope is with this system that she can take this book everywhere and use it to communicate to anyone, not just close family and teachers. We haven’t pushed its use too hard at home, but every night, I take the book out of Maddy’s backpack and make sure it is available to her. Many times, she will actually take the book to the couch and flip through the pages looking at pictures. I guess at this point, I feel like it’s good for her to look at it in a non-stressful or pressured way.

That approach seems to be paying off.  One of the pictures has the caption “Go Away”. Maddy has pointed at this picture when she is mad or frustrated with me (for example, after I give her some medicine). She also thinks it’s quite funny to point at this picture and give me a devilish grin. I always say, “Go Away?” in a very offended tone and she laughs at me. I often reply with “You go away!”, which makes her laugh harder. Her teachers have commented more than once on Maddy’s sense of humor and marvel at how she is able to get her jokes across even without words. The devil grin says it all.

Another recent breakthrough was when she asked me to read her a story. Maddy never wants me to read her a story, preferring to hold the book herself and be in control of the page turning. But, on that night, she pointed to the read me a story picture. I asked her almost in disbelief if she really wanted me to read her a story. She nodded her head yes with a bright smile on her face. It was all I could do not to dissolve into a puddle of happy tears. I started to read her a story. She let me get about 3 pages in before she took the book from me. But, it was progress none the less.


I’m so happy that the school was able to purchase this system and make this type of communication possible for Maddy. We’ve never had such quantifiable results with any other method in the past. She seems to be picking up this method so quickly in comparison. We are so incredibly blessed when it comes to the staff working with Maddy. Her teachers, her paras, the special education coordinator, all have worked incredibly for Maddy’s best interests. I was so nervous for her starting kindergarten this year. I’ve heard and read the horror stories of what some parents have to go through in order to get their children services. We are so thankful that Maddy has had nothing but the best in care and education at school this year. The progress she has made has been amazing and we can’t wait to see what the rest of the year brings! 

*update: Maddy has continued to use her PODD book both at school and at home. She recently showed me the picture for bedroom when she wanted to go to bed. She did so completely unprompted. 

Thursday, February 11, 2016

Good News!


We received good news the other day. The test results for the secondary genetic test to determine if Maddy had Pitt-Hopkins Syndrome came back. Maddy does not have this disorder. That was a bit of a relief, since this particular diagnosis can come with further health complications.

We were actually all on our way to the Mayo Clinic for another appointment when the call came. Maddy also had an appointment with an allergist. Long story short, the things we are worried about her being allergic to (dairy and gluten) are hard to test for. They basically told us that for a gluten concern we need to see a GI doctor. For the lactose intolerance issue, Maddy would need to blow into a breath device to test for it. That's not likely to happen. Therefore, we are continuing to do what we have been doing regarding Maddy's diet.

Life being what it is, I've been really behind in posting anything here, but am hoping to get back to regular posting soon.