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new to group, need advice

Posted by on Mar. 23, 2012 at 5:08 PM
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Hi! So my niece just turned 7 has just, finally, been diagnosed with high functioning autism. She was on medicine for adhd and they took her off to get a new baseline. My family has always had a hard time dealing with her, but now that she is properly diagnosed hopefully that will help with patience. Well, last week me, dh, and my mom took her to a science center. We also had two 3 year olds and a 8 month old. It turned into a juggling act to keep up with her. On top of the autism and being off her meds, she has little to no parenting. well, next weekend my dad, step mom, me, dh are taking all 4 kids on a mini vacation. we will at least have one kid per adult but I am really nervous about her running off. She ALWAYS runs off. She also has horrible.fits and behaves more like a 2 year old than a 7 year old. does anyone have any advice as to how we can talk to her to make her stay with us? It isn't unlike her to walk right out of a building if she wants to.
by on Mar. 23, 2012 at 5:08 PM
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kykeyu
by Member on Mar. 23, 2012 at 10:56 PM

    Simply talking to her may not work. You can try that, try telling her you want her to be safe, and see what she says. Next weekend isn't all that far away and it appears there are lots of issues at this point, I am guessing talking to her is not your best option right now. What you have is what we in the Autism community often refer to as a 'wanderer'. The good news for you is that there are ways to help a wanderer stay safe on outings that aren't all that 'obvious' to others and don't draw huge amounts of unwanted attention.

   What I would suggest is something similar to this... http://www.amazon.com/SafeFit-Harness-Backpack-Purple-Black/dp/B001DF7LIK ... if you can find it in a store where you live. If not, you can easily make something similar. To do this, you need 1 plastic buckle, a leash, and a couple feet of material similar to that used on school backpack straps. First, sew the loop, like in that picture in the link above, onto the bottom of a regular school backpack. Next, cut your remaining strap material in half, sew an end of each piece securely to one strap. Last, affix the buckle, and attach the leash to the loop you sewed to the bottom of the backpack.

   If your 'mini vacation' involves a hotel/motel stay, I would recommend something like this... http://www.radioshack.com/product/index.jsp?productId=3506458 ... for the inside of the hotel room door. When you get there, stick the alarm on the door and test it. Go about your business, and then before bed, turn it on. It's a great safeguard just in case of nighttime wandering. I use these when my family stays in hotels on vacation. I have a wandering child.

   Here's a poem I would recommend reading, my very favorite poem about Autism. It's called Welcome to Holland, by Emily Perl Kingsley. Here's the Youtube version, which gives great visuals along w/ the words...  http://www.youtube.com/watch?v=r15PuYoID94 

   It would be nice if the diagnosis does change the family patience level. Often the only one whose patience level you can count on is your own. Seems like you have some, as you are stepping up to find out what you can do to get rid of that gut-wrenching fear, the panic that wandering often instills in caregivers. Try these things, you will see they will make your trip much more enjoyable than it would be without them. 

 

slinkerpon11
by New Member on Mar. 24, 2012 at 8:39 AM
Quoting kykeyu:

    Simply talking to her may not work. You can try that, try telling her you want her to be safe, and see what she says. Next weekend isn't all that far away and it appears there are lots of issues at this point, I am guessing talking to her is not your best option right now. What you have is what we in the Autism community often refer to as a 'wanderer'. The good news for you is that there are ways to help a wanderer stay safe on outings that aren't all that 'obvious' to others and don't draw huge amounts of unwanted attention.


   What I would suggest is something similar to this... http://www.amazon.com/SafeFit-Harness-Backpack-Purple-Black/dp/B001DF7LIK ... if you can find it in a store where you live. If not, you can easily make something similar. To do this, you need 1 plastic buckle, a leash, and a couple feet of material similar to that used on school backpack straps. First, sew the loop, like in that picture in the link above, onto the bottom of a regular school backpack. Next, cut your remaining strap material in half, sew an end of each piece securely to one strap. Last, affix the buckle, and attach the leash to the loop you sewed to the bottom of the backpack.


   If your 'mini vacation' involves a hotel/motel stay, I would recommend something like this... http://www.radioshack.com/product/index.jsp?productId=3506458 ... for the inside of the hotel room door. When you get there, stick the alarm on the door and test it. Go about your business, and then before bed, turn it on. It's a great safeguard just in case of nighttime wandering. I use these when my family stays in hotels on vacation.




Thank you. And I don't know how well a leash will go over. She's 7 and damn near 100 pounds. I can keep up with her physically when she.runs off and she isn't wondering as much as she wants to do something and either we aren't there yet or we are done with it and that's where goes. But if she forgets where she is going or sees something along the way she is just gone. What makes it so hard is her mother had always let her run and do her own thing, she was playing outside by herself at 5. I'm always worried about her and it is really difficult to take her places. On even if she wasn't autistic she'd still be wild., she knows throwing fits gets her way. It is so exhausting trying to keep her safe, not to mention the kids she is plowing over without a second thought.

slinkerpon11
by New Member on Mar. 24, 2012 at 8:48 AM
That poem made me cry.
crossnlilly
by Member on Mar. 24, 2012 at 8:51 AM
My daughteris four and definately has a mind of her own. It may sound mean but we bought a kid leash for her. I always thought it was a mean thing but honestly it helped alot ti teach her to stay with us. We dont have to use it anymore. But wheb she tries to run off ill tell her take my hand or imgetting the leash. She takes my hand everytime. It just helped her to understand limits.
slinkerpon11
by New Member on Mar. 24, 2012 at 9:02 AM
Quoting crossnlilly:

My daughteris four and definately has a mind of her own. It may sound mean but we bought a kid leash for her. I always thought it was a mean thing but honestly it helped alot ti teach her to stay with us. We dont have to use it anymore. But wheb she tries to run off ill tell her take my hand or imgetting the leash. She takes my hand everytime. It just helped her to understand limits.



But on a 7 year old? I mean she could just take it off. And I don't think my parents would let me do it. I wish her mother would come on these trips but she sees them as a vacation for her away fr om her kids. I really do just feel like crying about it when I really think about it
kykeyu
by Member on Mar. 24, 2012 at 1:25 PM

  Yes... on a 7 year old. And the leash works, if only to keep you tethered together. With a pet you use a leash to keep it on a certain course... with a child it can be different, you use it to keep them close. You can still go do the things she wants, it will help you to know where she is headed and make it so she can't slip away without your knowledge. You can't be watching in ten directions all the time, you need a solution, and it could be just a temporary thing until she learns to hold a hand instead. I use this on my 6 year old, and the reality is that he may still be using some form of this when he is 10, or 12, or 19. Oh, and my 6 year old is the one in my avatar pic, sticking out his tongue, lol. He currently weighs 108 pounds. And your mom may not like it, but after a while she will see that it is a tremendous help.

   And that poem still makes me cry. No matter how many times I read it or watch it on Youtube, that home truth is still there. Years ago I boarded that imaginary plane, headed to an unknown land, and there is no turning back... I live in 'Holland' now. My house is full of special locks, padding, we're changing the glass to plexiglass... it's not a bad world, just different.

   I think it's great that you came here for advice regarding your niece. I hope her mother will one day join the forums too. When things get really bad sometimes I come here for advice, and the majority of the people on here aren't out to tear you down. With any child, a support system is important.

   Going off on their own without telling anyone, exiting buildings... that is part of what 'wandering' is. It's hard for them to have a care for their own safety, like with cars and people, if they are uber concentrated on other things. Just like that they could be gone, hit by a bus or taken by a stranger, drowned in the neighbor's pool; it's a very serious thing. Deep down you know that. It's hard to accept, that someone is different. It's possible her mother let her do what she wanted because she just couldn't control her and got sick of trying. Raising a child isn't quite as easy as some people envision, and not everyone is cut out for the hard work being a parent can bring.

   I can relate to her mother not wanting to go. It would be very easy, sending my kids off with someone I could be sure would keep them safe, getting that 'break'. For me it isn't that simple, I find myself wishing it were sometimes, lol. Have you sat down and talked with the mother, talked to her about your concerns? If you can do it in a non-blaming manner and express genuine concern, it's possible you might find that some things are not as cut-and-dried as they appear to be. I have heard that some of the people in my family say I am a bad parent, my kid breaks windows (etc.) and I seem too calm about it, I don't spank enough... the list goes on and on. But I know different. I am an involved parent, I keep them safe, clean, my kids are happy for the most part (violent rages notwithstanding), we go out in the community much more than other families I know who keep their kids at home like some dirty secret... I do what I can. I am faced with the reality that alone I am not enough, do you know what that can do to a parent??? I have a strong back, I can take a lot and then some, but not everyone looks at it that way. So talk to her mom, let her know she isn't alone; if that doesn't work, if it really turns out that she doesn't care, as it may appear, maybe she would let you take your niece for a while, work with her on some behaviors, or you could visit a lot if you live close. You could do it. You found us. You asked for help. But be aware that the behaviors you see when you take short trips or visit with her may not be all the behaviors she exhibits.

slinkerpon11
by New Member on Mar. 24, 2012 at 4:14 PM
I love my niece, she was my first child before I ever thought I'd have two of my own. And my sister has never been a mother., my family blamed my nieces behaviors on her lack of parenting. I always knew there was more to it and I seem to be the only one who can talk to her. As much as my niece doesn't think about all of the horrible things that could happen when she runs off my sister doesn't either. I wish with everything I could take her. I feel like she could be so much better with me. But I can't. She gave up the girls once and took them back and everyone wishes she hadn't. I, just wish there was more I could do. My sister won't talk to me anymore so I only have contact with the kids on these trips. I hate it. And I instantly attach myself to my niece and end up missing out on the trip with my own kids. I feel like I've missed so much while taking care of her. we are going to the aquarium and part of me wants to cry because I know I'll be chasing after her and dealing with her fits and not get to see how much my dd is enjoying it or the look on my sons face =/ I know they dont seem to care and have Daddy and will understand when they are older... I just wish it was easier.

Quoting kykeyu:

  Yes... on a 7 year old. And the leash works, if only to keep you tethered together. With a pet you use a leash to keep it on a certain course... with a child it can be different, you use it to keep them close. You can still go do the things she wants, it will help you to know where she is headed and make it so she can't slip away without your knowledge. You can't be watching in ten directions all the time, you need a solution, and it could be just a temporary thing until she learns to hold a hand instead. I use this on my 6 year old, and the reality is that he may still be using some form of this when he is 10, or 12, or 19. Oh, and my 6 year old is the one in my avatar pic, sticking out his tongue, lol. He currently weighs 108 pounds. And your mom may not like it, but after a while she will see that it is a tremendous help.

   And that poem still makes me cry. No matter how many times I read it or watch it on Youtube, that home truth is still there. Years ago I boarded that imaginary plane, headed to an unknown land, and there is no turning back... I live in 'Holland' now. My house is full of special locks, padding, we're changing the glass to plexiglass... it's not a bad world, just different.

   I think it's great that you came here for advice regarding your niece. I hope her mother will one day join the forums too. When things get really bad sometimes I come here for advice, and the majority of the people on here aren't out to tear you down. With any child, a support system is important.

   Going off on their own without telling anyone, exiting buildings... that is part of what 'wandering' is. It's hard for them to have a care for their own safety, like with cars and people, if they are uber concentrated on other things. Just like that they could be gone, hit by a bus or taken by a stranger, drowned in the neighbor's pool; it's a very serious thing. Deep down you know that. It's hard to accept, that someone is different. It's possible her mother let her do what she wanted because she just couldn't control her and got sick of trying. Raising a child isn't quite as easy as some people envision, and not everyone is cut out for the hard work being a parent can bring.

   I can relate to her mother not wanting to go. It would be very easy, sending my kids off with someone I could be sure would keep them safe, getting that 'break'. For me it isn't that simple, I find myself wishing it were sometimes, lol. Have you sat down and talked with the mother, talked to her about your concerns? If you can do it in a non-blaming manner and express genuine concern, it's possible you might find that some things are not as cut-and-dried as they appear to be. I have heard that some of the people in my family say I am a bad parent, my kid breaks windows (etc.) and I seem too calm about it, I don't spank enough... the list goes on and on. But I know different. I am an involved parent, I keep them safe, clean, my kids are happy for the most part (violent rages notwithstanding), we go out in the community much more than other families I know who keep their kids at home like some dirty secret... I do what I can. I am faced with the reality that alone I am not enough, do you know what that can do to a parent??? I have a strong back, I can take a lot and then some, but not everyone looks at it that way. So talk to her mom, let her know she isn't alone; if that doesn't work, if it really turns out that she doesn't care, as it may appear, maybe she would let you take your niece for a while, work with her on some behaviors, or you could visit a lot if you live close. You could do it. You found us. You asked for help. But be aware that the behaviors you see when you take short trips or visit with her may not be all the behaviors she exhibits.


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