Day 24 of 31 for 21: Signing and Seizures

We are big fans of Signing Times.   Children with Down syndrome can have some problems with their hearing.  Usually you will hear of parents talking about the ear drum being extremely small.  We have been told that Katie's are some of the smallest they have seen.  Katie did have tubes put in this summer after waiting for the last two years for her to pass her hearing test in both ears.  Believe it or not,she has never had the first ear infection, before or after the tubes.  It was our hope that the tubes would clear the ear canal of fluid which distorts her sound.  She also had an ABR while sedated to really assess her hearing problems.  She passed the hearing test, so we know she can hear for sure now.

Speech is a big challenge for our children also.  I started letting Katie watch Signing Times after I heard one good review after another from other people.  She loves it!  I do believe it has helped her in being able to say what she cannot verbally.  Her speech is still random, meaning I can't ask Katie to say momma and expect her to repeat it back to me.  I know she understands though.  Just tonight after her bath, she went up to a towel hanging in the bathroom and tried to say the word butterfly--the towel was covered with butterflies.  She said the first part of the word clearly, but she couldn't get out the rest of the syllables.  So what did she do, she signed it!  So, we know that they are teaching her.  She really cannot get enough of the videos.  They are her favorite thing to watch.  Kaitlyn is fascinated with us signing too.  I will sing the songs and sign to her and she watches me every time.  I love when I sing and sign and she will do it too.  I have learned several hundred signs just by watching these videos with her.  My goal is to get every one that has been published.  Would I have ever thought that I would be able to learn it?  I wondered, but once I started watching, I saw how easy it was.  I haven't kept track of all the signs that I have seen her do, but she does know a lot of them.  I know this is helping her right now as she is nonverbal for the most part. 

The shows are around 30 minutes.  Each episode is themed.  The instructor, Rachel Coleman, is very easy to follow as are the other two stars of the show, Alex (her nephew) and Leah (her daughter, who is deaf and the inspiration for the show).  They break down how to sign each word and then she puts the words together to form a song.  They show each sign in pictures and have other children also signing the word.  If you pay attention, other signs are shown which aren't the highlighted signs for the videos, but they help to expand your signing vocabulary.  The website linked above is to their store.  They also sell flashcards (which Katie loves), board books, and CD's among other things.  You can also find their stuff at places like Amazon, Best Buy, Ebay, etc.  I like her website because you can be put on their mailing list for sign of the week, updates on her blog and specials they run.  They just announced that PBS will start showing their shows again, which is awesome.  I hope that they will continue to put out DVD's for many years to come.

My mom and dad even sign and my dad said he was too old to be taught!  So if you are looking for a great way to communicate with your child, studies have shown that sign language is a great way to do that.  I think you would be very pleased if you started this with them.  Happy Signing!

If you followed my carepages, then you know that Katie also was diagnosed with Infantile Spasms at 8 months of age.  We got the multiple, daily seizures under control 4 months later with meds.  She has been seizure free since then.  We thought that she was having them again at the end of spring this year.  We bumped up her meds and went for an EEG.  The EEG was clear.  Her eye doctor saw her a week after the EEG and said that her squinting one eye and turning her head was an eye issue.  He was very sure of it.  We then began noticing that she would stop doing it if we called her name and she turned her head or that she would start doing it if she was trying to focus.  We have had a lot of trouble with her taking her seizure medicine this summer, but we have finally figured out that giving it to her first thing in the morning when she is hungry works best.  We see the neurologist this week for a checkup.  I think she is doing really well in that area.  I don't know if she will have to be scheduled for any EEG's or MRI's in the upcoming months, but I know we have talked about getting an MRI sometime soon.  Of all the things I have dealt with through this journey, the seizures were the hardest thing for me to cope with.  I am so thankful that she responded so well to the first medication he put her on and that she is still pushing forward developmentally, mentally and physically.