We have been working hard on helping Ryley start eating proper food again lately. He has basically lived on artificial formulas for the past 10 years. Not that this is a bad thing. It has helped him grow and enabled him to move his muscles better, so I am very grateful that this has even been an option for us.
But it time to start moving away some more from the formulas.
The first change was when he came off the Ketogenic Diet. This was a massive step for us. It had been our security blanket for a very long time. It all went smoothly though.
Since then he has been having 3 PEG feeds a day and we have also given him food at each meal as well has snack time. This has gradually helped him remember what food tastes like and allowed him to experience different tastes and textures again.
Today, I had this glorious remark to David when he got home from work:
"Ugh. Boys just eat sooo much. Ryley has not stopped eating all day. Teenagers..."
I have spent a fair chunk of my day today trying to make this movie. Fingers crossed it works. Though knowing my computer skills, it may not...
The song is "Party Rock Anthem" by LMFAO. It is seriously the song of the year I think. My kids LOVE to dance to it. We listened to it all the way to the Barossa earlier on this year (9 hours of driving). And personally, I don't mind it either, because it reminds me of the all the good times we have had during 2011.
I am currently reading a book called 'Strong Mothers, Strong Sons', which is written by Meg Meeker. This is the beginning of my journey towards understanding what I could be doing better when it comes to supporting Ryley with the teenage years (this should benefit Braeden too!).Of course there is nothing in this book so far that relates to teenagers with complex disabilities ie. if they can't talk. However, I do feel as though there is some useful content. My plan is to start sharing my findings, and hopefully, start the process of developing some practical guides for parents of teens with a disability.
One thing I have been reminded of, is how easy it is for a mother to cause pain in her son's heart. While she (or I, such is the case), is busy focusing on how she is feeling about her son's behaviour , her son is slowly backing away because he doesn't feel as though she cares. I get this. It is so easy to make a young person's behaviour persona…