Sunday, April 27, 2014

Wake Up Mom!

6:15am:        I have something dropped on my pillow right beside my head...startled I jump up to see what it is and it's Isaac with his iPad.  Then I hear the iPad say "WAKE UP MOM!".... he really is getting it, I am so elated that we are getting this kind of communication.  Best.Day.Ever!!!

Thursday, April 24, 2014

S-l-o-w progress.... but PROGRESS is happening with the iPad

Our family has been blessed beyond words with help getting both boys an iPad for communication purposes. Being a larger family that always seems to have something "pop up" that uses unbudgeted money and yet still trying to find that "extra money" to purchase two iPads was not something that was about to happen easily or quickly. We were thankful that the Lord provided for us in other ways.

Caleb received his iPad from his shopping spree via Make A Wish and Isaac was awarded one through an amazing organization called Shane and Wyatt Down Syndrome Foundation.  This foundation makes it a point to provide iPads to children with Down Syndrome who are having severe communication issues.  Isaac was chosen as their first recipient, how cool is that!?  You can click here to read our blog post about receiving it.

Caleb and Isaac have now had the iPads now for a little better than two years.  I must admit I have been getting discouraged with their progress using it.  I just KNEW it was going to be our answer to better communication with the twins. They are both whizzes navigating the iPhone for apps and games and YouTube videos they want to watch.  They really are impressive!  We have chosen to use the Proloquo2Go app to try to facilitate conversation.   I had high hopes reading reviews of the software that this is the right match for the twins to use.  After downloading it and going through kindergarten with it I began to have doubts that we, the family, and the school were properly trained to teach the boys to use it.  For the past two school years the iPads have just stayed at the school each and every day and during the summer months the iPad was sent home for us to use with them.  Honestly, we didn't know how to use them.  We didn't know how the school had been using them, so how were we to replicate that and keep the boys active with it?  It didn't happen.  I was frustrated, mostly with myself for not knowing how to use them to help my boys.

We started this school year with a few tweeks to the IEP in hopes for the iPad to be our answer again for communicating with the twins.  About 3/4th the school year has passed and I still am not seeing or feeling the iPads are 100% properly being utilized.  Not that the school isn't trying with them, just that I was expecting and hoping for m-o-r-e.  So about two weeks ago I sent a letter to the teacher requesting that the iPads be sent home with them each day after school.  One concern with this is the possibility of breaking it in transit.... that would be bad!  Another concern is that we would use them differently at home than the school uses them there and perhaps confuse the boys.   The only way to find out how to use the iPad was to take the plunge and request it be brought home and use them.

This past week I have seen two different instances that are worth sharing and to get excited about.  Easter weekend was a great time to give them some alone iPad time.  Just to hammer out buttons and let them explore the different folders and talking options.  To be honest they like to push the same button over and over and over and over and over and over....get my point?  Then they laugh hysterically when they push the talk button and the iPad says the same word 25 times in a row.  Its quite comical to watch them.  BUT in doing this they are navigating their way through the program and finding new funny words to repeat over and over and over and over again. This is learning the device in my opinion, so we let them do it.  At school they really refrain from allowing them to push the button more than once as it really is a time waster and a distraction to the rest of the classroom, so this was fun for them.

Saturday afternoon Isaac was browsing around different subject and pushing random buttons all over the place.  Not really making any sense of anything but just having fun saying different words... THEN, he found the dessert button.  He pushed dessert 20 times and out of no where formed a complete sentence.  "I want ice cream sandwich dessert.... and signed Please!!!" Whaaat??  He had the biggest smile on his face and brought the iPad directly to me and said the sentence again.  "I want ice cream sandwich dessert...and signed Please".  You better believe we ran right into town to get that boy an ice cream sandwich and he was very happy that he was clearly understood with what he wanted.

Then last night we gave him his nighttime meds to make him sleepy and  gave him his iPad to pass some time and hopefully learn more of the folders and words within them.  I can already tell he is very smoothly getting around and realizing where to push to talk about family stuff or school stuff or feelings or food.. This is VERY EXCITING to watch.. THEN after about 20 minutes of playing around he found the feelings folder.  He pushed "tired" and "sleep" buttons.  He looked at me and signed sleep, put down the iPad and laid down for bedtime.... What??!!!! This may seem like a tiny progress note but to me its a big big step.

Looking back over the past eight years I can honestly say I have been discouraged with a lot of things. Thinking that this might not happen or that might not happen.  Perhaps feeling like we should give up trying a certain thing with the boys only to find when we are about at the end of our ropes trying desperately to make it work something they "get it".  It took us signing words to them for almost 10 months before we got one sign back from them.  The first word signed back to us was Cracker.. Caleb wanted a cracker.  When that happened we were all so thrilled and emotional.  Now that I am seeing some actual progress with the iPad I am having the very same emotions.  They are GETTING IT.... They are GETTING IT!!!!

By far the hardest thing about parenting children with special needs is for me to be patient and allow Caleb and Isaac to do their thing when "they" are ready, not when "I" am ready or when I know the other kids have done something by time wise.

I'm not giving up on you boys!!! Mama wants to talk with you and get to know even more than I already do.