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Advice? Helping a mom with her teenagers.

post #1 of 4
Thread Starter 
I need to be very clear here. I am honestly seeking advice and I don't want to offend anyone if I use incorrect terminology or sound ignorant...because in this area I am.

My DH is a youth minister. He works with teenagers...been doing it for over 10 years. We currently have 2 brothers who attend our events who have obvious problems with social interaction. No need to list all of the things that are different about them, but it's obvious to everyone involved in the ministry...the other teens and the adult volunteers, one who is a pediatrician. the older brother has some strange behaviors but in general can interact enough with the group. The younger brother however really does not interact. Instead, he walks in circles around the perimeter of the room and quotes political commentary instead of answering questions about the topic at hand. Neither boy can really participate in physical activities, they usually just sit out while the rest of the kids play. They definitely walk on their toes.

So here's the problem. We welcome them to our activities, however it seems to me that the parents should be forthright about their kid's condition. Up to this point they have never once mentioned an issue and my DH was too uncomfortable to bring anything up. Now we are getting ready to go on an overnight trip and the mom send permission forms for both kids. DH discussed it with the pastor and they decided that they could not bring the young boy on the trip...there are too many unknowns and we do not have the staff to handle kids with disabilities or possible negative reactions to highly emotional/sensory events...this event is like a 3 day concert...loud music, thousands of kids screaming, etc. So he talked to the mom and thankfully she was understanding and then proceeded to tell DH that they know something is wrong with her son but the doctors have tested him for autism and ruled out aspergers so she doesn't know what to do. Here's the thing...our pediatrician who volunteers is SURE that both of these kids are on the spectrum, and they are not functioning enough for it to be Asperger's. So this mom is either seeing an incompetent doctor or she is in denial. These kids are 15 and 18. They are homeschooled.

I'm just really struggling with what should be done. I feel like it's really sad that these kids are not getting the treatment, therapy, whatever it is they need to improve their condition. The 18 year old is planning on going to college and live in a dorm...but I have serious concerns about his ability to take care of himself based on his interactions with us.

Do you think our volunteer (who happens to be a pediatrician) should talk to the mom? Should we recommend another doctor or a counselor?
post #2 of 4
That's tough.

I would go back to the mom and tell her that the other volunteer is a ped, and suggest that maybe he could help. I wouldn't have the volunteer approach her directly at this point as it may come accross that people are gossiping about the boys (I know your heart is in the right place, but I think you need to be extra careful about impressions here). But first I would make sure this volunteer is able to offer some concrete assistance, like taking them on as a patient and making the necessary referals. If he is just going to say that he thinks there is an issue, that isn't much help.

I do feel bad that the younger boy is being excluded from the trip. Is there a way someone from his family could go with him in order to offer one-to-one support so he can still participate?
post #3 of 4
Such a difficult and sad situation. They sound like they could be on the spectrum, at least the younger one has some definite signs of ASD. What's sad is the older boy sounds like he has some real strengths and if his deficits could be remediated with therapy (or had been remediated with therapy), there's no reason he couldn't go to college. I hope it's not too late to get them the help they seem to need.

Quote:
Originally Posted by flower01 View Post
So he talked to the mom and thankfully she was understanding and then proceeded to tell DH that they know something is wrong with her son but the doctors have tested him for autism and ruled out aspergers so she doesn't know what to do. Here's the thing...our pediatrician who volunteers is SURE that both of these kids are on the spectrum, and they are not functioning enough for it to be Asperger's. So this mom is either seeing an incompetent doctor or she is in denial. These kids are 15 and 18. They are homeschooled.

I'm just really struggling with what should be done. I feel like it's really sad that these kids are not getting the treatment, therapy, whatever it is they need to improve their condition. The 18 year old is planning on going to college and live in a dorm...but I have serious concerns about his ability to take care of himself based on his interactions with us.

Do you think our volunteer (who happens to be a pediatrician) should talk to the mom? Should we recommend another doctor or a counselor?
If your DH was able to talk to the mom and she was open enough to mention that the boys have been tested for autism and she says she doesn't know what to do then it sounds like she might be open to getting a (most needed) second opinion. I wouldn't tell the doctor to contact the mom, rather your DH could tell the mom there is a reputable doctor who can do an evaluation and he can put that doctor in touch with her if she has no objections.
post #4 of 4
Quote:
Originally Posted by flower01 View Post
they know something is wrong with her son but the doctors have tested him for autism and ruled out aspergers so she doesn't know what to do. ... They are homeschooled.
I think it is harder to dx high functioning kids who are homeschooled because being at home with parents who are used to working around the issues maskes tons of stuff.

My DD is 13 and had a full eval last year (which changed her dx from PDD-NOS to Asperger's) and much of what was considered was how she functions in groups -- esp. school. It's not like there is a test they give kids for high functioning autism. I filled in tons of questionaires, and the input of the school social worker and special education teacher was taken into account.

My DD *acted* totally normal during her eval. There was nothing about being tested one on one in a nice quiet office by someone good with kids that brought up any of her issues. Going by testing alone, she wouldn't appear to be on the spectrum.

The trip you are describing would be a nightmare for my DD, so I don't think you should feel bad for excluding the boy.

<<I would go back to the mom and tell her that the other volunteer is a ped, and suggest that maybe he could help.>>

Agreed. The kids having a doctor who has seen them in a group setting would really help.
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