Down syndrome, neurodystrophy, psychological and motor development disorder, alalia
Listed: October 21, 2012
From a volunteer who visited with him in July 2016:I’ve been struggling with words for this update on Duane, so I’m just going to write a very personal heartfelt update. I’ve been visiting Duane’s facility for many years now. I’ve seen the ups and downs of probably every child that we’re allowed to visit. But this year seeing Duane made me sad. Duane has regressed a lot through the last few years. This summer some other boys from his group were transferred and Duane is now the ‘big boy’ in his group. Now that he is the big boy in the group he starts to treat other children the way he has been treated himself. It breaks my heart to say that he hurts himself and others around him and that some of the smaller children are afraid of him. But I will not lose hope, because stronger than ever before I have also seen this year that there’s still a little boy in him who just wants attention and love. He is craving for someone who will love him. In the beginning of our trip, his aggressive behaviors made it hard to see that little boy. He’d push me away, he’d hit me, he’d hurt me pretty bad, but I couldn’t give up. I’ve known him for so many years, I couldn’t just accept that this was all there was left of Duane. One day I sat in the playpen with a couple children, including Duane. I had hesitated that morning if I should go in there, because of Duane’s aggressive behaviors. But that morning was different. I was singing a song to Elinor (also listed on RR) and Duane came a little closer. I was preparing myself for another hit, but he just sat there and looked at me. After a little bit Elinor was done listening, she stood up from my lap and walked away. Immediately Duane came over to me and crawled up in my lap. He laid his head against my chest. I’ve been singing the same song over and over again for at least 15 minutes and he was so calm, he would stroke my hand or leg every now and then, he would look up at me and look me straight in the eyes and the look in his eyes was calm and full of attention. I sang until he had to go inside. He moved to the edge of the playpen, while I was putting on his shoes he talked to me. Duane is mainly non verbal so it is quite a big thing when he talks. I’d repeat back to him what he said to me and he looked relieved and happy that I understood him. And then he told me ‘I love you’. Tears welled up in my eyes, Duane is still in there. You really have to look through all the behaviors and see the boy who’s craving love and attention. The boy who has been mistreated for so long. I saw that Duane. Apparently Duane loves singing, he loves it when he rides horse on my lap while I sing him a song. The real Duane came out when I gave him love and attention. He started to give me massages again, just like he used to do. He’s actually really good at that.
Duane needs a family. A family that is willing to give him a chance to be the boy that is hidden inside of him. A family that will give him the chance to communicate. He is going to need a special family. A family that is ready to fight for him. He needs a skilled, very prepared family. He needs to be the youngest in a family. He doesn’t have much time left, but he is so worth the fight. He ages out in November. He will face a life in a horrifying mental institution if he doesn’t get adopted. Duane still has a lot of love and light inside of him. He needs a family that can see that, through all his behaviors. It will not be easy, there are no guarantees. But Duane’s life is just as worthy and precious as all of the other children. He’s been waiting for so long and time is running out. He needs a family!
From a volunteer who visited with him in July 2014: ” Duane is a wonderful boy, but he doesn’t get the attention he deserves. It is getting harder to interact with him. He responds less and less when you try to interact with him. Even when you are interacting with him, he loses interest and he will lay on the floor again.
He is best friends with Isolde, but she has been put in a different group now. Nobody ever puts them together, so that’s what we did this summer. The nurses first wouldn’t let us, but we explained that they are best friends and then it was okay. They hugged for minutes, until he was getting weaker (his legs aren’t really strong) and he lay down on the floor again. Isolde tried to get him to hug some more or to play a game through the bars from the playpen, but he didn’t react anymore. I’m afraid that next year he’ll be worse again. He needs to get out. Duane has some language, but is mainly non-verbal. He shows no aggressive behaviors, but as said, he is getting weaker, he is showing less and less behaviors at all. Someone needs to go and get him out of there.”
From someone who met Duane in 2012: Sweet little Duane is the huggiest boy I’ve ever met! He is a determined, strong willed little guy and is up walking and chasing after balls despite some mild CP on his left side that causes his left knee to extend backwards in a painful looking manner. He has an amazing laugh, though it is sometimes a mischievous laugh. He sometimes feels the need to push boundaries, such as throwing balls at the other children, but he is a boy with a lot of love to give, both to the adults and the other kids in his group. He also sometimes gives massages. I feel he would especially thrive in a house where he is the youngest, or at least the smallest child in the home.
Significant features of FAS, shared as a cautionary disclosure for families considering his needs.
Elinor, Devora, Julia, Sullivan, Artemur, Duane, Abner and Irina may all be in the same region.
has been donated towards the cost of my adoption!