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Last stop.....

Posted by on Jul. 31, 2013 at 10:38 PM
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I have been a member of several autism groups and am hoping this one is different.  It seems that since my child is high functioning and verbal AND i am new to this whole thing that in other groups we simply don't exist except to be ignored blatently, told i need to do more research, told smart ass answers such as "how would you feel if i interrupted you every time you read a book, leave your kid alone" or told I am a bad mom because i don't ignore my other children and just revolve my life around my autistic kids.

I feel like i am alone in a sea where no one else exists and no one is willing to give any advice, hints, helpful thoughts, anything.  Hugs are great but they dont' give me knowledge.

couple all this with my community that has me at May 2014, yup almost a year, before i can get any services unless i can magically afford 250.00 an hour.

Anyway, not getting my hopes up but maybe this group will be different.


Anryan

Anryan,

Wife to.....

  David    and   Irish

by on Jul. 31, 2013 at 10:38 PM
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Replies (1-7):
KatyTylersMom
by Bronze Member on Aug. 1, 2013 at 2:10 AM

Welcome:)  I'm Meghan and my two kids have PDD-NOS.  My daughter is 4.5 and my son is 3 and both attend a great early-intervention preschool at the moment.  In addition we see a DAN! doctor who has them on a lot of great supplements that have really made all the difference in getting them back on track for language and health.  My son has ABA after school every day and speech once a week while my daughter just started a program called Brain Balance and I schlep her up to LA and back (4 hours round trip because LA traffic is SUPER AWESOME) three times a week.  We are doing homeopathy and I'm getting a consult about essential oils for the kids tomorrow morning.  WHEEEEE!  :)

Anyhow, ask us your questions we'll tell you what we know or don't know, and we're here if you need us:)

VioletsMomTown
by Robyn *Group Owner* on Aug. 1, 2013 at 9:30 AM

Hi Anryan, I hope we are the group you're looking for. I think we all want answers here too, we want to feel like we're doing something to help our kids. I can't stand the waiting lists, I've spent most of the time since my daughter has been diagnosed just waiting. I do a lot of biomedical treatments, changing diet and supplements and that has made the biggest impact so far. I also learned the Son-Rise Program, which can be good for low to high functioning autism, so I'm able to do it on my own now, which means no more waiting! (I have a post about it from last week) I find with behavioral therapies there is a lot you can do on your own if you want, less expensive that way too.

Hey, so I hope you don't mind me asking, do you actually have 2 husbands? How cool is that?! I'm not even sure I want my one some days, lol. You go girl.

Anryan
by on Aug. 1, 2013 at 4:36 PM


Quoting VioletsMomTown:

Hi Anryan, I hope we are the group you're looking for. I think we all want answers here too, we want to feel like we're doing something to help our kids. I can't stand the waiting lists, I've spent most of the time since my daughter has been diagnosed just waiting. I do a lot of biomedical treatments, changing diet and supplements and that has made the biggest impact so far. I also learned the Son-Rise Program, which can be good for low to high functioning autism, so I'm able to do it on my own now, which means no more waiting! (I have a post about it from last week) I find with behavioral therapies there is a lot you can do on your own if you want, less expensive that way too.

Thank you, I am trying to do things on my own, my hard spot is that she is about 2 yrs behind cognitively then she is in actual age so I keep thinking one thing and reacting to that and having to retrain myself to realize she isn't.  That probably makes no sense lol. 

Hey, so I hope you don't mind me asking, do you actually have 2 husbands? How cool is that?! I'm not even sure I want my one some days, lol. You go girl.

LOL yes i do have 2 husbands.  I have been legally married to david for 19 yrs and with irish for 4 yrs.  David also has an SO, another woman.


Anryan,

Wife to.....

  David    and   Irish

Anryan
by on Aug. 1, 2013 at 4:38 PM

thank you for your reply.  I lived in california and i know about that traffic, blech for sure!!!  We don't have any services, and likely wont for at least a year at this rate.  I am trying to find things online but it is hard when i don't even know where to start.  All i have is a diagnosis and what i see my child doing...No idea how to help her, what ways to help her.  When i asked in another group "do i stop her when she flaps or just let it be" i got the leave your kid alone statement.  So i have no idea if i redirect her, let her do it, why she does it, etc etc etc.

Quoting KatyTylersMom:

Welcome:)  I'm Meghan and my two kids have PDD-NOS.  My daughter is 4.5 and my son is 3 and both attend a great early-intervention preschool at the moment.  In addition we see a DAN! doctor who has them on a lot of great supplements that have really made all the difference in getting them back on track for language and health.  My son has ABA after school every day and speech once a week while my daughter just started a program called Brain Balance and I schlep her up to LA and back (4 hours round trip because LA traffic is SUPER AWESOME) three times a week.  We are doing homeopathy and I'm getting a consult about essential oils for the kids tomorrow morning.  WHEEEEE!  :)

Anyhow, ask us your questions we'll tell you what we know or don't know, and we're here if you need us:)


Anryan,

Wife to.....

  David    and   Irish

VioletsMomTown
by Robyn *Group Owner* on Aug. 1, 2013 at 4:54 PM

I see you're asking Meghan about hand flapping, and what I have found is that it can be out of their control, its kind of like a reflex that tends to come out with emotion, excitement or upset. It's easier to let them flap in my opinion, I know some therapies suggest stopping it, but its not a big deal to me. Do you know what kind of help she needs, you said she's high functioning, is it all social skills? Academic? What kind of therapy are you on a waiting list for, is it ABA? Maybe if we know more about her we can direct you to a good website or book to get you started. I'm wondering (sorry if you said it already) how old is she?

Anryan
by on Aug. 1, 2013 at 5:27 PM

I don't mind the hand flapping, or most of her other behaviours, i just want to help her and not sure how.  If those behaviours cause her no harm, more power to her lol. 

She just turned 4 but her congnitive ability is around 2 or so.  She will say hi to people but doesn't play with other kids, she will play next to them however.  I don't know what help she needs.  Her comprehension and speech skills are lacking that is for sure.  She mimic's alot of speech in place of answering on her own.  She doesn't tell us if she is hungry, thirsty, etc.  Intellectually she is amazing, she started reading about 6 months ago, can do basic addition and subtraction, etc.  She makes high pitched noises alot, spins in circles, walks on her toes, flaps her hands, repeats phrases over and over, if you don't answer her properly she persists with the same phrase (for example, if she says momma and i say Hmmm she will keep saying momma, but if i say "what" then she will say whatever it is she wants to say).

She doesn't seem to comprehend discipline either.  Time outs, etc don't phase her.  She will go right back to whatever got her in trouble in the first place.

Quoting VioletsMomTown:

I see you're asking Meghan about hand flapping, and what I have found is that it can be out of their control, its kind of like a reflex that tends to come out with emotion, excitement or upset. It's easier to let them flap in my opinion, I know some therapies suggest stopping it, but its not a big deal to me. Do you know what kind of help she needs, you said she's high functioning, is it all social skills? Academic? What kind of therapy are you on a waiting list for, is it ABA? Maybe if we know more about her we can direct you to a good website or book to get you started. I'm wondering (sorry if you said it already) how old is she?


Anryan,

Wife to.....

  David    and   Irish

VioletsMomTown
by Robyn *Group Owner* on Aug. 1, 2013 at 6:33 PM
1 mom liked this

Well I would suggest you take her to see a biomedical doctor, for one thing. Its hard for our kids to be open to learning when they have underlying medical issues which you may (or may not) realize are there. Have you tried changing her diet? My daughter was non-verbal and when I removed gluten and dairy she spoke 20 words the first week! She also stopped her repetitive behaviors to a large extent since I changed the diet too, and her thinking and speech are much improved (one year later she has at least 600 words).

So aside from the medical stuff, another thing I found really useful was using what is called PECS (picture exchange communication system). I made a board with some laminated pictures of things that my daughter needed throughout the day, and some fun activities and things I needed to communicate to her. They were on velcro and she could take them off and hand them to me. At first she would get upset, we would say "show us the card" and she would go get it. After a month or less, she started getting the cards and showing us. Every time she brought us the card we would say "drink" or "applesauce" or "swings" or whatever it was. So a few months into it, she was saying what every card was as she would hand it to us, we would say "what's this?" and she would say it. From there, she started needing the cards less and less, she would just tap us on the arm and say "drink" or whatever. Now, less than a year later she is just asking for things, without the cards. I still keep them posted up because if shes having a meltdown she doesn't think as clearly, so she might grab a card now and again. Our kids are such visual thinkers, they are able to associate pictures with what they need so much easier than finding the words sometimes. For your daughter, you could put the word written down next to the picture, since she's reading. Here is the PECS board I made, sorry the pics a little fuzzy (I made a different one for her at school). You can find pictures on google if you don't draw. You can get apps for PECS on an iPad too, I don't know if you have one, they are great for kids with autism, lots of great learning apps. Oh, and a book called More Than Words by Fern Sussman has been really helpful with teaching speech to her on my own.




Quoting Anryan:

I don't mind the hand flapping, or most of her other behaviours, i just want to help her and not sure how.  If those behaviours cause her no harm, more power to her lol. 

She just turned 4 but her congnitive ability is around 2 or so.  She will say hi to people but doesn't play with other kids, she will play next to them however.  I don't know what help she needs.  Her comprehension and speech skills are lacking that is for sure.  She mimic's alot of speech in place of answering on her own.  She doesn't tell us if she is hungry, thirsty, etc.  Intellectually she is amazing, she started reading about 6 months ago, can do basic addition and subtraction, etc.  She makes high pitched noises alot, spins in circles, walks on her toes, flaps her hands, repeats phrases over and over, if you don't answer her properly she persists with the same phrase (for example, if she says momma and i say Hmmm she will keep saying momma, but if i say "what" then she will say whatever it is she wants to say).

She doesn't seem to comprehend discipline either.  Time outs, etc don't phase her.  She will go right back to whatever got her in trouble in the first place.

Quoting VioletsMomTown:

I see you're asking Meghan about hand flapping, and what I have found is that it can be out of their control, its kind of like a reflex that tends to come out with emotion, excitement or upset. It's easier to let them flap in my opinion, I know some therapies suggest stopping it, but its not a big deal to me. Do you know what kind of help she needs, you said she's high functioning, is it all social skills? Academic? What kind of therapy are you on a waiting list for, is it ABA? Maybe if we know more about her we can direct you to a good website or book to get you started. I'm wondering (sorry if you said it already) how old is she?




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