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nanb 05-23-2006 09:48 AM

Help New to everything
I just found this board because I needed info on Autism.We were just told my grandaughter has a new type of autisum its between autisum and aspergers. They dont know much about it yet so I cant even look it up. They will give her meds for Autism. but she is not on anything yet. She is 7 yrs old. Right now her biggest fear is the Wind and loud noises. When she started kindergarden I was afraid the bell would be a problem but it wasn"t she is now in 1 st grade and has an aid to help her she is a B student and the size of a 3rd or 4th grader. We thought for sure she would be held back this year but with the aid helping her to get her work done with out drawing pictures on the answers.
I really need to know how to know the right way to correct her for behavior.
Bath time is the worse her mom has to physically drag her to the tub then screaming her way through the hair washing. She had to call me last night and it hurt to here the screaming going on. My daughter said this goes on all most every night.
Now thinking back to when she was 2 she had done the same thing but we didnt think much about itbecause it did stop. Now is back. Is it ok to let this crying to go on or will it set her back in some other way. Because right now we dont know how to deal with it.
Really we dont know how to deal with anything. Time outs are not working for behavior.

elmhar 05-23-2006 11:31 AM

Re: Help New to everything
Hi Nan,

[QUOTE]We were just told my grandaughter has a new type of autisum its between autisum and aspergers. They dont know much about it yet so I cant even look it up. [/QUOTE]
It's hard to shoot in the dark & hit the mark.

If you want to help your DGD (dear grandaughter), you need more specific information. The parents have a legal right to printed copies of the reports of whatever testing/assessment was done. A diagnosis will be specified on the report.

Does your DGD have PDD-NOS? In PDD there are social & emotional issues similar to autism, but language development is OK, unlike classical autism.

Does your DGD have sensory issues? It sounds like her hearing may be acutely & painfully sensitive. It's possible that sensory issues may be triggering her problems w/bathing.

There are so many, many different ways to help kids who are "on the autism spectrum." BUT, it's best to have more info about what you are dealing with. Behavioral problems are dealt with much differently from sensory integration disorders and panic disorders. Much of the time, we are working to slowly teach the child, rather than to abruptly correct the behavior (which usually doesn't work anyway).

[QUOTE] They will give her meds for Autism.[/QUOTE] Sorry, the FDA has not approved any such drugs, as far as I know. There are only drugs for symptoms: for anxiety, for attention problems, for violent/psychotic behavior. The majority of prescriptions written for autistic children are strictly "off-label." Meaning, the drugs were not developed for use in autism, are not recommended for use in autism, and were never tested on autistics. Many of these drugs are "off-label" on a second count, in that they were never developed or tested on children at all, they were designed for adults. Off-label prescribing is a very lucrative venture for psychiatrists.

When you get more specific information, you will be in a good position to invest time in further reading & research.

Best wishes.

Tina81980 05-23-2006 11:38 AM

Re: Help New to everything
Hello..I wanted to write you and let you know that you are not alone! It can be heartbreaking to get this diagnosis. My 5 yr. old son got the Aspergers Diagnosis this past Nov. We immediatly started Behavioral Therapy. This basically is where we learned the behaviors that are Autistic, & the ones that are just Typical kid and how to deal with them. This also worked on behavior modification. He went from being a wild, bossy, Deifiant, always on the go little boy, to a calmer, content little boy. Now we still have our issues with him being impulsive, somewhat bossy, and aggressive but he has made alot of improvements. We also started Occupational Therapy for Sensory integration issues. This sounds like something that is a issue with your granddaughter. My son would have bad reactions to things like bright blinking lights, (Christmas Trees were a real issue here) loud sounds, textures like jeans, smells, and like your GD hair brushing and washing. He tells me each of these things hurt him. Occupational Therapy for Sensory Integration helps with these. So these are some things you may want to look into. With alot of work things can get better. I am still pretty new to this as well, but if you ever need something answered or just need to vent, I am here, as well as the others.

nanb 05-24-2006 06:33 AM

Re: Help New to everything
Thanks for the replies I think I better let my daughter see this board she can provide the right info. I have MS and tend to get things mixed up. I guess I just needed someone to talk about it.

sross24 05-24-2006 08:20 AM

Re: Help New to everything

I find it interesting that you have MS. We had a discussion last month about MS. There seems to be a high incidence of MS in family members of children with autism. Two of my children have autism, and my mother has MS. I will see if I can find the previous thread to bump up for you to look at.

My daughter is 6 and has PDD-NOS. It sounds like that is what your grandchild has. My daughter also has had many difficulties with bath time. With her, she needs lots of preperation (knowing what is going to happen), and (when it is going to happen). Also, we bought her goggles for the bath tub, so water will not get in her eyes. And we got a special sprayer that detaches from the shower so we could have more control when getting the soap out of her hair. Hopefully some of these suggestions might help. Good luck, and keep us posted.


Liz Cook 05-24-2006 10:48 AM

Re: Help New to everything
i just wanted to through my thoughts into the pot:) what has saved our lives was getting case management services. this is a person who is independant of all the other services who's only job is to make sure that you get what you need for your kid. they have been a god send for us. we were completely lost at where to start but they evaluated our son, set up a physc eval so he could be diagnosed, and then from there found tons of services for him. here in maine we also have autism society of maine which you can call up and they will suggest good doctors and case management services that have been given good "reviews" :) by other parents. so yes there is a ton of stress (and honestly it will still be a little stressfull for some time) but there is DEFINATELY lots of help out there so be brave and hold on for a bit more soon there will be plenty of understanding people who can start to point your granddaughter to the "right" path:)

nanb 05-24-2006 01:29 PM

Re: Help New to everything
That is very interesting about family members and autisum. My daughter clames that one night she wanted to take a shower not a bath but there were oher nights of crying and screaming at bath time. [ [COLOR=Sienna][I]REMOVED[/I][/COLOR] ]

islandgal62 05-24-2006 05:50 PM

Re: Help New to everything
Hello, I am also a Mother of a child w/Autism. My guy is now 10. He did not talk or even say "Mom" until he was 3. The info. on PDD-NOS is almost correct, however, people often think that these children do not have language impairment - not true of all. In fact - the one thing you can count on in all of this is that EVERY KID IS DIFFERENT!! I am a vocal advocate for these kids and their parents/families in our county. My child now talks a blue streak and has just complete MAINSTREAM - not special Ed - 3rd GRADE w/ 3A's, 3B's and 2C's!! I am so proud of him! There are all sorts of things I would tell you that helped us - but the most important in my mind is "Direct Instruction", also called "Hand over Hand". This is where you break down all tasks in very small steps and do them w/her and often. Give her lots of verbal encouragement and maybe some other rewards - we started w/mini M&M's. Anyway, find out more about this. You will not teach a PDD-NOS kid to brush their teeth - you will teach them to 1. Take out the toothbrush, 2. Turn on the water, etc. (bit by bit - one thing at a time - lots of repitition). Also, post pictures of her doing each step, put them on her mirror or somewhere she will see them often, look at them and discuss. "Susie? Remember yesterday when we got the toothbrush out? Let's do that again now." Put your hands over hers and get out the toothbrush - even if she refuses. Then say "Good job!!, etc". Find resources whereever you can. I hired college students to do this over the summer.$7. an hour. Some used him as school project, etc. I never minded! They gave him lots of love, too!
Don't be afriad to get w/school and ask for things "they have never done before" for your grandgirl. Push her and for her.
Also - I see that the new TIME magizine has lots of Autism info.
This disorder takes alot of work on everyones part, sibs and child included. But they are in there somewhere - smart and loving! Don't give up. Hey, I even get help the neighbor kids to help!! :) Best wishes, Mar-

9CatMom 05-24-2006 08:43 PM

Re: Help New to everything

Good news about your son! Your hard work has paid off! Great to know he is doing so well!

Jaedyn 05-25-2006 10:04 AM

Re: Help New to everything
Forcing a child with autism is always hard but I have found through my experience that if you talk them through it and give them lots of warning and do practice runs it helps.

Eg, 30 mins before bath time set a timer and give a warning that in 30 mins we will be bathing. All the way through the 30 mins remind her that when the timer beeps you will be taking her for a bath.

Other things you can do is give her toys/dolls a bath where there is no pressure for her to get in but you run through the same routine with her dolls so you can notice what things she does. Does she protect their ears? Does she avoid certain parts of it. This might help you get more insight into what bothers her.

Make the bath a fun place, not always for washing. Some days just let her go in for fun with colourful foamy soap, letters that stick to the wall, there is tons of bath stuff out there. Do not require any washing out of her at this time and after 20 mins or so get her out and show her its not always a bad time in there.

Set up a routine with photos so she knows it is coming like a photo of dinner, then of tv, then of the bath so she knows after dinner I get to watch tv then I take a bath. Have this posted in a visible place with the photos on velcro so she can move them up into the current position when it is time for that activity.

Hope these ideas helped. Good Luck! ([email][COLOR=Sienna][I]REMOVED[/I][/COLOR][/email].) if you wish to contact me.

[COLOR=Sienna][I]Please read the posting rules which explain that offering or asking off board contact is not permitted. The boards are to be used for on board sharing, only. The email and private message features are turned off so that use of the message boards remain anonymous. The only contact you may make with members is to post on the board.[/I][/COLOR]

nanb 05-31-2006 07:22 AM

Re: Help New to everything
Well I was wrong about some things. She will be treated for ADHD not autisum. She is s D student not B. Bath time is getting a little better. But what hurts me the most is the yellling at her when she does not listen. Telling her its time to leave and she doesnt want to the yelling starts Giving her 5 or 10 minute warning doesnt even get through to her even though she agrees. Even bribbing her with something doesnt do it. She has to either be draged to the car or she is crying all the way while being yelled.

Curious Nana 05-31-2006 08:13 AM

Re: Help New to everything
Hi! I too, am a grandmother of a special child. I have been very involved in learning and exploring the issue of acute hearing issues with our kids. Your intro to info about your granddaughter made me think again about how valuable an evaluation for this could be. Check out AIT, Auditory Integrative Training. I wouldn't be surprised if it could help. I also understand the push to "control" the unwanted outbursts through meds, but I also have experienced the fact that if we "cover" symptoms with meds and see results, we might be tempted to quit searching for the underlying causes that could resolve the problems, at least to a certain degree. Also, with your MS, have you tried sleeping on a magnetic mattress????

nanb 05-31-2006 10:00 AM

Re: Help New to everything
(I also understand the push to "control" the unwanted outbursts through meds, but I also have experienced the fact that if we "cover" symptoms with meds and see results, we might be tempted to quit searching for the underlying causes that could resolve the problems, at least to a certain degree. Also, with your MS, have you tried sleeping on a magnetic mattress????)

Thanks for the reply
She isnt on any thing right now they still have to wait for the report sent to he ped so he could subscribe something.
She really doesnt have outburstes she is just mouthy with talking back then more yellling comes. Nothing will stop me from getting more info on this.
As far as my MS it really isnt bad I have learned over the past 20 years how to deal with it IM not on anything for it. Nothing ever agreed with me.

Liz Cook 05-31-2006 10:49 AM

Re: Help New to everything
it think nanb that irregardless of the actual diagnosis that your granddaughter ought to be given behavior training that will help her cope with her problems because even if it is just adhd that can be modified with drugs there will come a day that those drugs wont work. meds that are used for children wont work on those same kids once puberty hits and then they have to be switched to other meds that have more dangerous side effects and are not always tolerated well. if the meds help then that good BUT curious nana was right the issues still need to be addressed. she needs to learn how to calm herself with or without the medication (granted docile child meds can produce can be so tempting at first) or her parents could be looking at a very difficult bunch of teen years.

nanb 05-31-2006 11:55 AM

Re: Help New to everything
(to be given behavior training that will help her cope with her problems because even if it is just adhd that can be modified with drugs there will come a day that those drugs wont work. meds that are used for children wont work on those same kids once )

Were would she have to go for this behavior training. She went to an holistic dr. before going to specialist and she seemed to be better cause he said to take her off all juices and sweets because she was on here way to being diabetic. God I wish this was all a nightmare but I guess everyone does. I think Im looking for answers that I may never find

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