I saw this post the first time around and hoped someone would pick it up.............perhaps you can post it with the teen forum also? If you did already, excuse my redundancy. Since this is a hidden forum not everyone knows it is here.
Is there a group of trusted friends that he could do short outings with? Some who are mature enough to guide/help him?
I will watch curiously as I have a 4yo with down syndrome. He will most likely always be a bit behind what his age group peers are doing............and I sense this is very much my future.
Right now I'm dealing with the body of a 4yo with the intellect of a 2yo. He is able to do much more than he is ready for (little concept of danger yet, doesn't like stop or no).
We are also joining a group for foster/adoption parents, and we think we might meet some other folks there who can relate to our son better than lots of the world can, which could provide him with some good "aunties and uncles." My hope is that some folks we meet there can perhaps help him be more involved in the community.
I know he gets a greater sense of normalacy when he can at least not have us and his other care-team members doing all the supervision. He's a hard kid to be around, at times, though, so I don't know how much others might be willing to invest in doing outings with him. It can be incredibly draining, and also sometimes amazingly frustrating.
Our son averages out to probably be at a 7-8 year old level, but his developmental jigsaw puzzle has peices that range anywhere from 3 years old on up. It is no fun being trapped in the grocery store while a physically-15-years-old kid is having a 4-year-old's tantrum. Then, of course, it is not much more fun when he actually acts like a teenager...blech LOL!
Interestingly, I find myself being goofy and sometimes longing for him to have down sydrome so that his disability could be obvious to the world. There is nothing harder than having someone flip out on him when he is "misbehaving" as if he was actually a teenager. Just because he looks 15...because his physical body seems like that of any 15 year old boy. So I fantasize about the world having more patience because they can see him and know why he wont act the way they think he should. But then I know that might make it harder for him too, and I am sure my fantasy is far from reality anyway. Does the world really have that much more patience for those whose disabilities are obvious?
Am I a weirdo or what?
|Originally posted by Sierra
Does the world really have that much more patience for those whose disabilities are obvious?
Am I a weirdo or what?
No, you are not a weirdo.
Yes, The world, IMHO, does have more patience for those whose disabilities are obvious.
My own son is almost 11, looks 13 and is currently on a 1st grade academic level. Socially, he does well with older children/adults and younger. When he is with his peers (what ever that means) he is very challenged!
I'm sorry you didn't get more responses to this. I just now saw it. My son is only 7, so I can foresee this in our future. Right now when my son asks why he cannot do something, I usually take it as a sign that I am holding him back a bit. For him to ask, it is important to him, and something he feels he can do. I try then to find a way that I can feel he is safe, and he is able to do this thing. Is there an Easter Seals near you? I know that here, the Easter Seals and the Parks and Rec dept both have programs for teens and adults with disabilities. They have different outings and events. Maybe your son could find a peer group through a similar program? Or maybe there are certain skills he woudl need to develop before you felt he could be alone in public. If you told him he needed to learn X, Y and Z first, and helped him to do that, it mught make both of you fele better. I don't know, just some thoughts.
khrisday, that's a good idea about checking whether we have a local Easter Seals. I'll do that. My local parks and rec has nothing. At least this summer he'll be doing some outings and things with other foster kids (supervised by Case Aides), which should help make him feel a little more independent.
The bad news is that I can't really talk to him about learning about X, Y, and Z because he can't seem to grasp, from a cognitive standpoint, that he is not able to do some of the things he can't do. For instance, he insists he can make safe choices, and yet just yesterday he chose to do something that could have gotten him arrested outside my work, even with me standing 10 feet away. KWIM? Also, he has a hard time grasping long-term stuff. Like he thinks that if he behaves some way once, that it means he has "proven" himself. The behaviors he needs to develop will take at least a couple of years for him to cultivate and consistently demonstrate, given where he is at now developmentally. I am fairly certain I am not holding him back, though I can think of a few times when I have held him back simply because it was too energy draining to supervise him while he struggled to do his thing. I don't do that often, but there are times when I am just too close to wits end. In terms of time in public, his safety plan was written by a whole team of people and does not allow for unsupervised community time. It would be like sending a 5 year old out on his own, kwim?
However, I do not trust him to be very far away from me. There are times he does great, then will come home (all cocky teenager) and push the limits because he's had a little freedom.
It's a tough balance, but keep it up. He needs you more than you are probably aware of. Most of the time I think my son hates, then he gets scared and screams for his "mommy". Anyway, I don't know if this helps, but I know I like to hear that I'm not alone.
Sierra, the OP, posted this in 2003. Her son must be 25 years old now. She also hasn't been online since January. I just wanted to point that out to you in case you wonder why none of the PPs reply. They probably won't see it. I didn't realize that a thread I started was getting attention so long after the original post. I discovered it when surfing one day This is a great topic though.
~Patti~ Momma to three girls and three boys , First mother to one girl
Certified, card carrying member of the IEP Binder Club
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