6 replies to this topic

[Theresar360]

We are looking for toys for Victoria. Does anyone know where we can find toys that are adapted for a quad child to use. We have seen a couple of toys at the hospital that she pushed a button with her chin to play with a bubble machine and a penguin game but have seen no others. Her grandpa and I have looked all over the internet and can't seem to find anything. I know that this is a rare thing but there have to be other children just like her in this world. All kids have to play with toys and we just have to figure out how to do this. So if any of you have ideas or know where to go to find these toys please let us know. She is a very inquisitive baby and loves to play........Thanks, Theresa

[ems]

Has she got any other movement atall below her neck? There's a foster family in our road who have kids with severe disabilities on respite, and I know they have all sorts of things in the kids rooms.

http://enablingdevices.com/catalog

Theres a whole variety of different switches, that can be pluggedinto other toys, but if you knew someone with an electrical mind, you could get things like Vtech telephones and tht sort of thing and rig them up. Our neighbour has allsorts of things for the children there, and I know that one of the kids has Quadripligic CP, her mind is fine, but she cant move much atall, she has some movement in one arm, she can make it twitch a little and she has strap on movement sensors and chin switches to operate all her toys. They have managed to rig up *normal electronic toys*, and they even have a lego tehnics table with pullies on and stuff that she can control with hew switches and makes things turn on and off, they have a music box, a jack in a box.. all sort of things. they have great fun setting up new things for her to do and making it all work with servos and switches!
I know this girl is a bit older, she's about 6, but she can play with jigsaws by pointing with her mouth stick, and it all still tires her! She's using her brain most imprtantly, which 'is' tiring!!!

http://specialneedst...catID=Cognition

Edited by ems, 12 October 2008 - 08:15 AM.

[Theresar360]

ems, on Oct 11 2008, 11:28 PM, said:

Has she got any other movement atall below her neck? There's a foster family in our road who have kids with severe disabilities on respite, and I know they have all sorts of things in the kids rooms.

http://enablingdevices.com/catalog

Theres a whole variety of different switches, that can be pluggedinto other toys, but if you knew someone with an electrical mind, you could get things like Vtech telephones and tht sort of thing and rig them up. Our neighbour has allsorts of things for the children there, and I know that one of the kids has Quadripligic CP, her mind is fine, but she cant move much atall, she has some movement in one arm, she can make it twitch a little and she has strap on movement sensors and chin switches to operate all her toys. They have managed to rig up *normal electronic toys*, and they even have a lego tehnics table with pullies on and stuff that she can control with hew switches and makes things turn on and off, they have a music box, a jack in a box.. all sort of things. they have great fun setting up new things for her to do and making it all work with servos and switches!
I know this girl is a bit older, she's about 6, but she can play with jigsaws by pointing with her mouth stick, and it all still tires her! She's using her brain most imprtantly, which 'is' tiring!!!

http://specialneedst...catID=Cognition

Thanks Ems, Victoria has no movement past her neck. She has used 2 toys that they adapted for her at the hospital that had a little pad that they placed under her chin and she opened her mouth and pressed her chin down to start the toy. I thought that was pretty brilliant for a child that was not quite 2 years old at the time. I found both of those sites you sent and really did not see anything that would be for a quad. The only thing I was thinking was that the pads they showed on the second site could possible be used. If we could figure out how to wire them to some sort of interactive toy. I guess this is going to be a big challenge but we have been there before! We are setting up a computer for her. Her grandpa found a site where they have headgear and she pushes pads on her cheeks with her tongue to control it. I don't understand how that would work but he said it looked like it would. I told him we are dealing with a baby still that may have to wait for awhile.
We try to keep her stimulated by reading alot of colorful books, showing her different pictures, hanging mobiles above her bed and on the ceiling. It is difficult though for us probably more than her due to the fact she was such and active baby. She was always running I don't think she ever walked a day in her life she would put her little arms back (like little wings) and just start running. She did this all day long. Boy did she tire us out! That is why this is so hard because I know her body is broken but her little mind is not! I want to make her life as full as we can under the circumstances. So thanks again for the info! bless you. Theresa

[orangepop]

Hi,

I'm a special ed teacher in the US and I've worked with a lot of kids with severe physical disabilities. One thing you might find useful is a PowerLink, which can be found here: http://www.ablenetin.....rd=power link

The PowerLink is an adapter that you can use with anything that can be plugged in. You would also need switches to go with it, but any brand will work. You plug the PowerLink into the wall, and then you can plug in up to 4 toys and switches into it so Victoria can choose what she wants to play with.

You are in the US, right? You should be eligible for Early Intervention (EI) services through your local public school district. EI is kind of like a home-based pre-preschool for children with disabilities. Depending on how your local school works, you could probably get access to OT and PT through them. I think it would be of no cost to you, but I'm not positive. That could be in addition to any therapists you have working with Victoria now.

If you ever have any special ed or other questions, feel free to ask. I wish you the best

[Theresar360]

orangepop, on Oct 13 2008, 05:57 PM, said:

Hi,

I'm a special ed teacher in the US and I've worked with a lot of kids with severe physical disabilities. One thing you might find useful is a PowerLink, which can be found here: http://www.ablenetin.....rd=power link

The PowerLink is an adapter that you can use with anything that can be plugged in. You would also need switches to go with it, but any brand will work. You plug the PowerLink into the wall, and then you can plug in up to 4 toys and switches into it so Victoria can choose what she wants to play with.

You are in the US, right? You should be eligible for Early Intervention (EI) services through your local public school district. EI is kind of like a home-based pre-preschool for children with disabilities. Depending on how your local school works, you could probably get access to OT and PT through them. I think it would be of no cost to you, but I'm not positive. That could be in addition to any therapists you have working with Victoria now.

If you ever have any special ed or other questions, feel free to ask. I wish you the best

Thanks for the info. I have been looking at some of the previously listed sites and trying how to figure out what to do. This helped alot. The sad story with Victoria is that she is getting no therapy at all at home. "The Little Red Schoolhouse" which helps children with disabilities in our area has refused to continue to come and help her because she has MRSA. Mind you it is not active MRSA. My daughter was told at Children's Hospital in Seattle, that they can't do this it is discrimination but they still won't come. Her only alternative is to drive her an 1 1/2 hours to another city for rehab. This is why it is so important to use to try and give her as much stimulation and help as we can at home.
It really angers me that this has happened to her. She is a very smart little girl and I just can't stand to see her just lying there with nothing to do. The only problem I think that could arise is if we teach her to do things and it is the wrong way. I am not sure how to teach her but we will figure it out. I told my daughter that something is bettter than nothing and if she has to be retrained "OH WELL". Thanks so much for your help! Theresa

Edited by Theresar360, 14 October 2008 - 02:05 PM.

[orangepop]

Wow, that stinks that no one will come to your house. I agree, it doesn't seem fair.



Don't worry about teaching her to do something the wrong way. You didn't mention her having any brain damage or mental impairment that I can remember, so even if you did teach her something "wrong", it won't take her long to relearn it. I don't think there really is a "wrong" way to teach someone to do something--- as long as she can do it in the end is what matters.


One other random thing: As far as stimulating her brain, just do what you would do with any other child her age-- take her to the park, out to eat, read her a story, etc. You'll have to make adaptations to work with her physical abilities, but she will probably still have a good time. (They do build accessible parks-- go into google and do a search for your town or zip code and "accessible playground" and you should come up with something.)

[Theresar360]

orangepop, on Oct 14 2008, 06:17 PM, said:

Wow, that stinks that no one will come to your house. I agree, it doesn't seem fair.



Don't worry about teaching her to do something the wrong way. You didn't mention her having any brain damage or mental impairment that I can remember, so even if you did teach her something "wrong", it won't take her long to relearn it. I don't think there really is a "wrong" way to teach someone to do something--- as long as she can do it in the end is what matters.


One other random thing: As far as stimulating her brain, just do what you would do with any other child her age-- take her to the park, out to eat, read her a story, etc. You'll have to make adaptations to work with her physical abilities, but she will probably still have a good time. (They do build accessible parks-- go into google and do a search for your town or zip code and "accessible playground" and you should come up with something.)

Victoria has no brain damage at all. She still has swelling of her brain stem though. We are hoping when this finally goes down that maybe she will breath on her own. She is on a ventilator which makes it very hard to do alot of things with her. My daughter said that where her injury is she should be able to breath but I just don't know. She has a complete severe of her spinal cord so the paralysis is a sure thing. It is hard to deal with this but can you imagine how hard it is for her with her mind being completely okay and being so young and not understanding why she can not move. I see her sometimes just straining to try and pull herself up. It is so heartbreaking. She has a 8 year old sister and my youngest daughter (Victoria's aunt) is 11 years old love to play with her. We have discouraged them from dancing around in front of her because she cries and I know it is because she wants to also. My daughter is considering the lung pacers but wants to wait and make sure that she will never breathe on her own first. If either of these happens I will think it will make life easier for all concerned especially Victoria. Then I can take her more places and she can be more active. This just absolutely breaks my heart. She is from a big family but she is the youngest and the baby. Everyone of us would trade places with her in a second but that can't be so we just pray that each day something good comes out of it for her. Thanks for writing ....Theresa