Wow. I am getting a bit weary of this daily posting, I have to admit. But I must persevere & keep you informed & entertained. ; )
As I have said, Cayden was blind, deaf, mute and had a variety of other physical issues and motor challenges. It was fine for me to deal with, I was used to his needs & could read him easily. However, when he was not with me I wanted to be sure that his aides understood him as well. Some of our nurses were excellent (Bethany, Kelly, Berkeley, Shanna) some mediocre (no names come to mind, because they were not noteworthy), and some were flat out AWFUL (crazy Donna for one, girl freakishly scared of dogs another). But I needed a break & they were paid to care for him, so I wanted to allow that to happen.
Cayden also attended Sunday School and church nursery, and nursery at my MRO Bible Studies (thanks Patti, Melanie, Ann, Josette & Kim). We sometimes had babysitters, and at 3 he started attending preschool. In a few minutes during drop-off, I could go over some of his issues with his aide, but not a whole lot. Luckily, the ladies at the church nursery were excellent with him & had cared for him since he was a baby, so he was pretty well spoiled there.
Babysitters were few and far between & usually a friend of ours who could handle the frequent vomit & other Cayden issues (love you bunches–Dana, Stacy, Mindi & Eddie, Amy, Bonnie & John, Coleen & Jimmy… thanks for helping us out). My parents lived across the country, but came frequently to help, especially during surgeries & other busy times. Thanks Mom & Dad! And Joey’s parents came to help a few times too, thanks Jack & Pris. If I have forgotten anyone, I apologize, we do appreciate all the helpers we had at home & out in the community. It took a small village to raise this little man!
I needed a break now and then from the constant caregiving. I needed to feed and play with my other child. I needed to rest. I needed time in Bible Study. I needed time to re-fuel & I needed to trust others to care for my son. It was hard, but it was necessary.
Luke says in Acts 20:35: In everything I’ve done, I have demonstrated to you how necessary it is to work on behalf of the weak and not exploit them. You’ll not likely go wrong here if you keep remembering that our Master said, ‘You’re far happier giving than getting.'”
For those times when we needed to share caregiving duties, I came up with this little book for Cayden that I printed out, laminated & put on a ring. It hung on his wheelchair near the handles. I encouraged people who were caring for Cayden to read it and become familiar with it, so they could learn more about his little idiosyncrasies.
So for the rest of today’s post, I am going to let Cayden do the talking, as he would have if you were his temporary caregiver. I think you will learn a lot about him and perhaps you can begin to imagine how hard it was for us to leave him with others.
As I leave him with you, I tell you this… Remember, he can hear, & he can see you. Don’t talk about him, or over him, talk to him. He might need to be changed, but he should wiggle & let you know it he does. Please don’t let him sit in his chair all morning. He loves to sit in your lap & be cuddled, especially while eating or reading a book. Don’t yell in his ear, but don’t talk too softly either, both are frustrating for him. Sign if you can, but if not, use his symbol pages to see if you can figure out what he needs. Those are in the backpack on his chair. Thanks & have fun! I’ll be back tomorrow!
(If you click on the picture, it will enlarge the cards for you!)