Re: Put him in a group home

[Guest guest]

Betty, I am so sorry they would bring that up rather than try to offer you some respite in your own home....why not ask for/why didn't they offer to send someone to help you? You need someone to come to you and let you have breaks/work with him on goals...not remove him from your home. This kind of thinking burns me up....just the simplistic way the state thinks far too often!

I would request an in-home care provider(someone to come in a couple hours a day at least to help you). I don't know what state you live in, but some states have Medicaid waviers kids with autism can get on that pay for in-home respite care and housekeeping assistance, even nurses who can come for kids who are medically fragile...is there any waiver where you live? Family Resources should be available to pay for respite too(through your MRDD). Nursing agencies send out home health aides to assist people with disabilities, and there are independent medicaid providers...either one might be possible to get to work with your son so you aren't the only one working on toileting and watching over him.

I am sad to hear this was what was offered to you...don't settle for it unless you have to.

take care and hang in there...Sally(in Ohio the state often requires parents of severely behaviored kids to give up custody before they give help, then the parents lose their rights and have no idea what is going on with the child...I would never do this unless there was severe danger to the child or others)

[Guest guest]

Sally, our home is so small to have someone to come and live in. I am the one being paid for In Home Service care of Evan. We also have Respite money available but finding the right person to do the Respite is not easy. It has to be done in our home because he can escape from most other places in the blink of an eye. Just like his pooping escapades. It only takes a minutes or two of no one watching him and he has pooped and messed in it. My dear hubby and I had a big fight tonight over his meds and I did not get around to make Evan any of the goop I wanted to make him. i have found a few that sound like they might be fun and is more than ready to be my helper.

Fruity Putty

30-45 minutes

0.3 -ounce package of sugar free fruit flavored gelatin

2 cups flour

1 cup salt

4 tablespoons cream of tartar

2 cups boiling water

2 tablespoons cooking oilMix the dry ingredients in a pan. Add the boiling water and cooking oil. Stir over medium-high heat until the mixture forms a ball. Place the ball on waxed paper to cool. Store in an airtight container. Cut the fruit picture from the gelatin box and paste to the lid. Use different flavors to make all different colors and smells. Gooo-Blek

15-30 minutes

1 cup of corn starch

1/4 to 1/3 cup of water bowl

Pour the corn starch into the bowl. Add the water on top. Mix well until a thin mixture occurs. Let it sit until it gets solid. Even though it appears to be solid, the heat of your hand when you pick it up turns it to liquid!

Kool-Aid Finger Paint

30-45 minutes

2 cups flour

2 packs un-sweeten Kool-aid

1/2 cup salt

3 cups boiling water

3T. oil

Mix wet into dry. The kids love the color change. Then finger paint away.

Nutty Butter Playdough

15-30 minutes

1 C. Peanut butter

1 C. Powdered Milk (I have a whole bunch of Dari-Free milk substitute and thought I might try and use it here.)

1 C. Honey

1 C. Oatmeal

Mix together and play and/or eat.

Pudding Paint (Here I was thinking about using those package puddings. The ones with 4 in a package. Wal-Mart sells them for $1.00 a package and that is about the price of a package of instant pudding.

0-15 minutes

Instant Vanilla Pudding

Food Coloring

Mix pudding according to directions. Add food coloring for desired color. Finger paint on paper plates. Edible

Rainbow Stew

15-30 minutes

1/3 c. sugar

1 c. cornstarch

4 c. cold water

Cook until thick. Put in bowls, add food coloring, let cool. Put in ziplock baggies. Let the kids play with it while it is in the bags for a neat sensory experience or use it to mix colors.

[Guest guest]

My heart is aching for you Betty, its the day we are all dreading. I keep hoping for some miracle.........

Lorna

[Guest guest]

Betty, these are great ideas!! Thanks for sending them. It is raining here today and Karac will not be able to ride his bike or scooter; this will be something neat for him to do on this rainy day. LOL, Pat K

[Guest guest]

Betty, have you checked out the group home? Maybe it would be a good place for Evan. We had to hospitalize Karac for several weeks last summer, and I was very stressed about it at first, but he adapted very well, and that was very encouraging. I came to believe he was better off there than in his own home! God bless, Pat K

[Guest guest]

Hi Betty, I didn't mean live in, though that is what I wrote:) I know what you mean, our house is small too...I meant it would be nice for them to send someone for a while each day instead of suggesting removing him. Take care, Sally(thanks for sharing the recipes:)

[Guest guest]

Hi Betty, I didn't mean live in, though that is what I wrote:) I know what you mean, our house is small too...I meant it would be nice for them to send someone for a while each day instead of suggesting removing him. Take care, Sally(thanks for sharing the recipes:)

[Guest guest]

You are welcome for the recipes. We are trying to get our little pooping machine to wear his pull-ups for awhile during the day instead of just at night because it makes for an easier clean up. right now he is not to keen on the idea and if he does not want to wear them, he will not.

BETTY ANN-61 yo, probably undx'd bipolargrandma and guardian to

ANDREW - 12 yo-- Bipolar/ADHD, HomeschooledEVAN - 9 yo-- nonverbal/LF-MF Autism/MRDAVID 7 yo Bipolar/ADHD

and mother to ANDREA -32 yo, their mom -Bipolar/ADHD

wife to BOB - 72 yo, a very tired grandpa

[Guest guest]

Yes, Pat, it is the biggest fear we face next to death.

BETTY

----- Original Message -----

From: LornaBerry@...

My heart is aching for you Betty, its the day we are all dreading. I keep hoping for some miracle.........

[Guest guest]

No, Pat, I have not checked out the group home. One of my friends checked out the closest home a few years ago and while she said it was nice, it concerned her how this woman could give all 7 children the attention that they all needed. She said that she would keep her son home as long as she could. She finally uprooted her family, sold their property her and move closer to a better district. I wish she had kept in touch because I think her oldest boy was probably bipolar, now that I know more about it. When she left she was thinking maybe he was RAD and wondering why. That son was about 's age and her other son was in Evan's class and also has nonverbal lf-mf autism. He was quite a bitter even as a small one and she refused to medicate either of the boys. Both boys were extremely violent at times. It is so hard to know what to do in cases like this but I do not think Evan is going to a group home anytime soon. He was so sweet and giggly tonight. We cannot take it out on him that he gets agressive when he gets tired or frustrated. Actually he is the least agressive and the best behaved of all three boys.

BETTY ANN-61 yo, probably undx'd bipolargrandma and guardian to

ANDREW - 12 yo-- Bipolar/ADHD, HomeschooledEVAN - 9 yo-- nonverbal/LF-MF Autism/MRDAVID 7 yo Bipolar/ADHD

and mother to ANDREA -32 yo, their mom -Bipolar/ADHD

wife to BOB - 72 yo, a very tired grandpa

Re: Put him in a group home

Betty, have you checked out the group home? Maybe it would be a good place for Evan. We had to hospitalize Karac for several weeks last summer, and I was very stressed about it at first, but he adapted very well, and that was very encouraging. I came to believe he was better off there than in his own home! God bless, Pat K

[Guest guest]

Betty, I know what you mean. Karac is actually the easiest of all our grandkids to keep. I tell him he is the best kid his mother has. Even if you don't like the alternative; sometimes it helps just to know there is an alternative; at least it does for me. Karac has basketball special olympics practice today and has asked me to take him; so I need to go get dressed. I hope you have the poop under control. LOL, Pat K

[Guest guest]

Betty, I know what you mean. Karac is actually the easiest of all our grandkids to keep. I tell him he is the best kid his mother has. Even if you don't like the alternative; sometimes it helps just to know there is an alternative; at least it does for me. Karac has basketball special olympics practice today and has asked me to take him; so I need to go get dressed. I hope you have the poop under control. LOL, Pat K

[Guest guest]

Anything like this in CA ?

CB 's Granny

[Guest guest]

Betty, just fyi...there is a special place in Ohio called "Bittersweet Farms" that parents started for their kids with autism to ensure they would have a good place when their parents couldnt' keep them. I would consider sending my own son there if I need to. They have tons of land, there are homes with a few people with an assistant, they have jobs, (bake bread, raise plants that are sold, etc.)animals, do activities, ride horses, etc. it is like a real community-not a cold sterile environment at all-there is a newsletter they send out and they do lots of things. I have heard nothing but wonderful things about it. It does have a 15 year wait list the last time I heard, but it is amazing...they sell Christmas trees and wreaths, have greenhouses, go and work in the community if they are able at regular jobs, etc...it is an excellent place in Whitehorse Ohio, and you can find it if you do a websearch. There is a very expensive book about it too. I am not saying to send him there, but it is a special place and if you are interested for the future, I would get his name on a list now if you liked it.

I always try to think ahead as far as I can...fyi.Sally

[Guest guest]

Betty, just fyi...there is a special place in Ohio called "Bittersweet Farms" that parents started for their kids with autism to ensure they would have a good place when their parents couldnt' keep them. I would consider sending my own son there if I need to. They have tons of land, there are homes with a few people with an assistant, they have jobs, (bake bread, raise plants that are sold, etc.)animals, do activities, ride horses, etc. it is like a real community-not a cold sterile environment at all-there is a newsletter they send out and they do lots of things. I have heard nothing but wonderful things about it. It does have a 15 year wait list the last time I heard, but it is amazing...they sell Christmas trees and wreaths, have greenhouses, go and work in the community if they are able at regular jobs, etc...it is an excellent place in Whitehorse Ohio, and you can find it if you do a websearch. There is a very expensive book about it too. I am not saying to send him there, but it is a special place and if you are interested for the future, I would get his name on a list now if you liked it.

I always try to think ahead as far as I can...fyi.Sally

[Guest guest]

Thanks for sharing these details Sally. I did a search and found the data:

http://www.bittersweetfarms.org/aboutus.htm

http://www.amazon.com/exec/obidos/tg/detail/-/1560240423/103-2504329-1420626?%5Fencoding=UTF8 & m= & n= & asin=1560240423

Bonnie

-------------------------Sally <eeyores1@...> wrote:

Betty, just fyi...there is a special place in Ohio called "Bittersweet Farms" that parents started for their kids with autism to ensure they would have a good place when their parents couldnt' keep them. I would consider sending my own son there if I need to. They have tons of land, there are homes with a few people with an assistant, they have jobs, (bake bread, raise plants that are sold, etc.)animals, do activities, ride horses, etc. it is like a real community-not a cold sterile environment at all-there is a newsletter they send out and they do lots of things. I have heard nothing but wonderful things about it. It does have a 15 year wait list the last time I heard, but it is amazing...they sell Christmas trees and wreaths, have greenhouses, go and work in the community if they are able at regular jobs, etc...it is an excellent place in Whitehorse Ohio, and you can find it if you do a websearch. There is a very expensive book about it too. I am

not saying to send him there, but it is a special place and if you are interested for the future, I would get his name on a list now if you liked it.

I always try to think ahead as far as I can...fyi.Sally

[Guest guest]

Thanks for sharing these details Sally. I did a search and found the data:

http://www.bittersweetfarms.org/aboutus.htm

http://www.amazon.com/exec/obidos/tg/detail/-/1560240423/103-2504329-1420626?%5Fencoding=UTF8 & m= & n= & asin=1560240423

Bonnie

-------------------------Sally <eeyores1@...> wrote:

Betty, just fyi...there is a special place in Ohio called "Bittersweet Farms" that parents started for their kids with autism to ensure they would have a good place when their parents couldnt' keep them. I would consider sending my own son there if I need to. They have tons of land, there are homes with a few people with an assistant, they have jobs, (bake bread, raise plants that are sold, etc.)animals, do activities, ride horses, etc. it is like a real community-not a cold sterile environment at all-there is a newsletter they send out and they do lots of things. I have heard nothing but wonderful things about it. It does have a 15 year wait list the last time I heard, but it is amazing...they sell Christmas trees and wreaths, have greenhouses, go and work in the community if they are able at regular jobs, etc...it is an excellent place in Whitehorse Ohio, and you can find it if you do a websearch. There is a very expensive book about it too. I am

not saying to send him there, but it is a special place and if you are interested for the future, I would get his name on a list now if you liked it.

I always try to think ahead as far as I can...fyi.Sally

[Guest guest]

Thanks Bonnie, I am not feeling well today and am getting and off the computer when I am bored/feel like getting off the couch. Bittersweet Farms is an amazing and outstanding place...not like the typical things offered parents, because parents started it:) They wanted real lives for their kids...it's something to consider anyway...Sally

[Guest guest]

Sally,

Do you know if they take referrals other than from MRDD. I checked out their website & it states most of the referrals come from MRDD. I was just curious -- especially if there is a 15yr wait list & they only serve 20 individuals.

Do you know much about them -- financially. I mean, Emmy has the I/O waiver. Do you think that would pay for it..if something happened to either my husband & me & her siblings were not able to care for her.

A child is like a butterfly in the wind, some fly faster, some fly harder but they all fly the best they can. Each one is different, each one is beautiful and each one is special.

Re: Put him in a group home

Betty, just fyi...there is a special place in Ohio called "Bittersweet Farms" that parents started for their kids with autism to ensure they would have a good place when their parents couldnt' keep them. I would consider sending my own son there if I need to. They have tons of land, there are homes with a few people with an assistant, they have jobs, (bake bread, raise plants that are sold, etc.)animals, do activities, ride horses, etc. it is like a real community-not a cold sterile environment at all-there is a newsletter they send out and they do lots of things. I have heard nothing but wonderful things about it. It does have a 15 year wait list the last time I heard, but it is amazing...they sell Christmas trees and wreaths, have greenhouses, go and work in the community if they are able at regular jobs, etc...it is an excellent place in Whitehorse Ohio, and you can find it if you do a websearch. There is a very expensive book about it too. I am not saying to send him there, but it is a special place and if you are interested for the future, I would get his name on a list now if you liked it.

I always try to think ahead as far as I can...fyi.Sally

[Guest guest]

,

I don't know much about their system. If your child has a developmental disability(like autism)your MRDD should be willing to give a referral(I would ask the case mgr./ssa:)

It might be possible to get a referral from a psychologist you work with...I don't know. Financially, I think they would take the I/O or similar MRDD funneled funds(there is also supported living that might kick in). This is the kind of thing I need to learn about myself, I am sorry I don't know more about it. I want to go and visit it, since I live in Ohio and my family is not very supportive(I have a friend I have thought of making my son's guardian if we both died who is younger than me...but she has severe diabetes...it is so hard to know what to do...)sorry I don't know more. I know they get grants and raise some money from their tree and plant sales, etc. and get other outside donations, etc...but primarily it is probably the same money another ICFMR would get. Take care,Sally

[Guest guest]

Sally,

I would be interested in making a visit also. I know that most of the kids on the AutismOhio list are younger than your son. Perhaps during spring time -- I can sneak a visit in

A child is like a butterfly in the wind, some fly faster, some fly harder but they all fly the best they can. Each one is different, each one is beautiful and each one is special.

Re: Put him in a group home

,

I don't know much about their system. If your child has a developmental disability(like autism)your MRDD should be willing to give a referral(I would ask the case mgr./ssa:)

It might be possible to get a referral from a psychologist you work with...I don't know. Financially, I think they would take the I/O or similar MRDD funneled funds(there is also supported living that might kick in). This is the kind of thing I need to learn about myself, I am sorry I don't know more about it. I want to go and visit it, since I live in Ohio and my family is not very supportive(I have a friend I have thought of making my son's guardian if we both died who is younger than me...but she has severe diabetes...it is so hard to know what to do...)sorry I don't know more. I know they get grants and raise some money from their tree and plant sales, etc. and get other outside donations, etc...but primarily it is probably the same money another ICFMR would get. Take care,Sally

[Guest guest]

Hi ,

maybe we could meet there... they have spring sales of plants I think around Mothers Day...take care,Sally

[Guest guest]

I don't know...you could contact Bittersweet, there is some kind of association out there for some group homes, they might know of one. I want to see more of this type of community that can shelter those who need it...Sally:)

[Guest guest]

How about Texas? Pat K

[Guest guest]

Betty:

Which Regional Center are you with? Has the RC ever sent you paperwork to sign for a medical waiver? One of my sons gets that through RC and the last form I signed was stating that I wanted to keep him at home. I called the worker to ask about this form since it was confusing.

Are you planning on taking the kids to the CURE autism now event at Dodger Stadium in April? We live very close and could meet you there. They have many jumping things there for the kids to get inside and bounce around.

A few years ago I had a nurse come from the Reg Ctr to observe me feeding my son since we were figuring out if a G tube was necessary and what else could be done. This was before we got the feeding clinic via the RC.

Anyway I never heard another word and then last year I was at the RC for something and my worker had the file for this one son and I asked for copies of things and there was this rude note from the nurse on her visit here and she made note of the tone of my voice and other things. This was so upsetting to me reading this now and wondering who all got a copy of this.

This is the reason why I hardly get services, especially after reading the assessments for behavior and floor time. They observed my son at school and come here for observation. Well they got the wrong kid because my son has never climbed the jungle gyms and canot imitate a Dinosuar, but they said he did and then had conflicting accts from me and the classroom aide.

The way they write their reports is an insult. Mother states this but the school does not, blah blah and then they said something about how many diapers I changed my son and sprayed air freshener instead of changing him and then they would not use PECS so I said I did not want it.

I was on another list where this parent placed her daughter in a group home and her story was published in Exceptional parent. She has been there now a year and is 9 years old or 10 I think. Anyway I can look to find the issue the story is and maybe I have a copy online I can locate.

Before that several years ago I read another similar story in that magazine and it was helpful too.

Bonnie in Los Angeles

---------------------Betty <banthony@...> wrote:

Well, Evan's worker from the Regional Center and one of their nurses came bytoday to discuss Evan and I guess to see what kind of health we are keepinghim in. Here I was thinking they might be going to to discuss how to dealwith some of his behaviors but apparently it was just about the rash I toldhis worker he had. It was the rash he got from being allergic to the plasticcovering on his new bed. I realized what it was while I was sitting in theroom waiting for the PA to come in. You know how all of a sudden a lightwill come on in your brain and something clicks? The PA agreed with me thatit was an allergy rash and then pointed out how his other cheek was swolleneven though it did not have the red rash. A couple of Benadryl and takingthe plastic off his mattress and he was ok the very next day.So I brought up his pooping activity and

the fact that he had bit me and once recently. Their response had me bawling even though I know itmay be coming, we do not want to think about it. They asked if we wereprepared to put him into a group home where the people could handle himbetter. He can still come home on the week end. They want me to check outtheir facilities. That is not something that we are ready to do yet. I amstill hoping that we will be able to find the kind of help that will allowhim to stay at home. I wonder what kind of help that we might get from theschool.BETTY ANN-61 yo, probably undx'd bipolargrandma and guardian toANDREW - 12 yo-- Bipolar/ADHD, HomeschooledEVAN - 9 yo-- nonverbal lf-mf autismDAVID 7 yo Bipolar/ADHDand mother to ANDREA -32 yo, their mom -Bipolar/ADHDwife to BOB - 72 yo, a very tired grandpa