59631✽
We've been having quite a time with our son, Ben lately. He keeps stuffing his mouth and then choking when he tries to swallow - this is called bolting. He's 24 and has rare genetic syndromes: 17q21.31 microdeletion syndrome, and Opitz FG syndrome. His greatest challenges come from having a missing part of his brain, the corpus callosum, which joins the two hemispheres of the brain. He is affected throughout his body, and life is hard for him physically and especially emotionally as he suffers from anxiety.
But, the past few days have been good and he's been happy! I wanted to share this picture with you all. He has Mac, one of our parrots, on his shoulder, and I think he's really Cute!
Comments (10)
109788✽
The photo didn't come through-I am glad the past few days have been good for Ben. Give him a hug for me-T
13250✽
Wow, and still you do all that you do. You are an amazing women. How is it going with your new dog? Has he bonded to Ben yet? Will keep you all in my thoughts and prayers.
1 comment
Bia has bonded to me, instead of Ben! But she does come when he calls her, and she sleeps with him. He does all her feeding. Thanks for all the prayers!
109774✽
by
crafter2243
04 Jun 2012
+7✽
I am glad he has some happy days lately and I am sorry that the picture did not come through.
211079✽
by
shirlener88
04 Jun 2012
+6✽
So sorry it has been hard for you and Ben - but glad that there have been some good days, too. I keep you both in my prayers.
145791✽
255054✽
Wishing you much strength Jan and love to you and Ben. Hugs Sarah.
12500✽
Oh, we LIVE for those "happy" days for our special kids, don't we, Jan!! We are "challenged" moms, and those smiles are such rewards for our daily trials and tribulations!! Looking forward to seeing Ben with Mac on his shoulder! Give him a great big hug for me!
Love YOU!
Angel
Love YOU!
Angel
59631✽
by
hightechgrammy
04 Jun 2012
+4✽
I couldn't get the photo to upload here or in Projects - He is quite a project - he he. I wanted you all to see the picture so badly I uploaded it in community - I hope that is okay :-) We have locked all the food sources, the doors to all outside places, and the microwave is locked so he can put things in it, but he can't make it turn on. We have the sinks so they cannot fill up with water now. All closets are locked. The refrigerator has a bungee cord holding the handles closed. We have mouse-traps on the counters to keep the dog from getting into things! Our whole house is booby-trapped - LOL. Bia (Bee'-yah) is sleeping with Ben and maybe that is helping him sleep a tiny bit longer. Ben is on a new med and he is not crying as much. He still doesn't want to leave the house, but I take him anyway. When I ask him if he want to go somewhere he says, "Just stay home and watch Ben's favorite videos. Ben take care of the house." Which, of course, I can't do, because of the choking. Thanks for all your concerns and prayers! hugs, Jan
2 comments
I want to tell you I have an incredible husband, Willie, who helps tremendously with Ben, and gives me tons of support and breaks away from Ben. He is a rock and I thank God everyday for him! Even though he doesn't really understand about scissors and sewing and things - LOL!
things like that - he tries!
158718✽
Jan, when folks say that you "have your hands full." Tell them they should see your HEART! ;)
1 comment
I LIKE that!
89895✽
Seems like you have the food secured. Like you I would be concerned he would eat when no one was around him and choke. Some situations you just have to get through.