Re: Anyone out there with an adult child my Andy's...

[Guest guest]

I am new to this list and have a 4 year old daughter with DS. I would love to hear your story regarding your son! Highs and lows are very helpful for us mom's with youngsters!

[Guest guest]

WOW! Andy sounds like he has a wonderful family and what a blessing you were there to fight to get him back to where he belongs! I hope that my daughter will live on her own. That is down the line. WE are blessed with 4 children and they all fight over who will "get" sara! I hope it lasts. My question is this....when your child turns 18 you have to get legal guardianship???????????????????????????????????? I think this is so important for all of us newbie parents to know! Thank you and have a blessed and SAFE! 4th of July!

Marcy

[Guest guest]

Hi! Thanks for writing. I would be happy to tell you about my Andy, character that he can be. Andy was diagnosed with DS when he was four months old. The Drs. suspected when he was three months old and at that time, it took a month to grow out the chromozones. He was born six weeks early and they didn't know if he would make it. He was in one hospital and I was in another and it was very hard when other babies were brought into see their mothers and there was I, 24 and no baby to hold. Well, he made it through and I held him in my arms for the first time when he was 11 days old! His first year of life was nip and tuck but the Lord made him strong and he is a fighter! Andy was four before he was potty trained although I started with him before he was one just to get him use to using a potty. He didn't walk but crawled like greased lightning before he

walked. He would pull himself up with his arms to the diningroom table to look over it which meant he had to chin up! He is so strong and I have to tell him he isn't as strong as he thinks because he has tried to take us on when he has gotten angry. That is the down side of our DS kids, some cannot control their anger like we can and we have to find ways to help them not to get to where they just take after you. Andy lived in a group home for awhile, well, for 11 years with us being around constantly to make sure things were going well. We would never put ourselves through that again because things go on in Group Homes that parents don't know about unless you keep your thumb on the situtation. We had to get the police to go in and take our son out. I had to hide a shoe to keep him from walking back to the Group Home. By the grace of God, the shoe thing worked because he didn't want to go anywhere without that shoe. The people at the Group Home had turned our son away from

us by telling him he couldn't have anything to do with his parents any longer. They told him he couldn't even talk to us. It was a mess and I strongly advise any parent thinking of a Group Home for their child to forget it! Things are not what you think behind closed doors and I was sick all the time because of what the people running it put us through all the time. This is really condensed here but Andy is doing so much better living at home with us and being around his family. He speaks better and he is much healther. We only allowed Andy to live in a Group Home because when the people came to talk to us about it, it sounded great. Well, we said we would let him try it since that is what he wanted. Well, we had no idea what all would take place and how they would even block our getting guardianship of our own son when he turned 18. Parents, you must become your childs guardian or all hell will break loose. We never knew the grief people would cause us because our child

has DS. We heard and heard all about his rights, well, we have rights too and according to our attorney, the guardianship gives the parents all the rights of any parents with children living at home. You protect your child and their monies as well from those who want to abuse your child and steal their money. A horror story we have that goes on and on! We are just thankful to be at this point in our life and our son's life who is very happy to live at home with us. He isn't stripped of his rights because in a group home, his rights were actually what they wanted them to be! We are also our son's legal conservators and no one else touches his monies which was also a sore spot for those running the GH in NM where we lived. Spear yourselves the total grief He is very stubborn yet has a tender heart and we find ways to turn him around that work. It is whatever you find that works with your child you do to keep sane! He can be very

ornery at times and very demanding. He doesn't like it when anyone tells him what to do, like his Dad or I and now informs us he is 34! Andy does much better around his family and friends because he will speak better as he listens to them. If he around someone who doesn't articulate their words, he will copy that too. He is just a little copy machine in the flesh LOL He is really harlious how he will show everyone in our family how they act by acting like them. We all get a big kick out of him. Well, I best hunt him down and have him do his reading for me before our house fills up with family and friends today on the 4th. Have a happy 4t! God Bless America and God bless our Troops!rdavis900@... wrote: I am new to this list and have a 4 year old daughter with DS. I would love to hear your story regarding your son! Highs and lows are very helpful for us mom's with youngsters!

[Guest guest]

Dear Trish,

Thank you so much for sharing your experience with Andy. He sounds like a great guy!! And thanks for the emphasis on getting custody as we will soon be dealing with that issue. is 17 and I'm just learning that I need to establish guardianship in December (the month before her 18th birthday) or I am in for big trouble. Perhaps this would be different for a very high functioning child...I think you can establish partial guardianship or something, not clear on that...but with who is virtually nonverbal and in many ways still a toddler mentally we need to establish full guardianship. One of my friends let this slide and she ended up at a hospital appointment with her 18 yo daughter who is autistic and the doctors would not let Mom into the examining room. They finally allowed her in after her daughter told them that Pat Sajak was president but it gave her the push she needed to get the legal work done.

I am sooooo happy you are here and sharing with us. We really need you!

Sherry mom to DS/Autism in Florida.

[Guest guest]

I have been told that you do have to have legal guardianship.

On Tuesday, July 4, 2006, at 04:17 PM, rdavis900@... wrote:

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[Guest guest]

<<I have been told that you do have to have legal guardianship.>>

I believe there are different choices. Your child may have you as a guardian but also retain certain rights like voting etc. Or you may go for total guardianship. We're getting ready to meet with a lawyer about this. If your child is high functioning (from my limited understanding) you may be depriving him/her of the kinds of equal rights etc. that we all hoped to have for our kids by obtaining total guardianship. In our case it is necessary but I believe there will be many among you who may choose a different approach. Again, find a lawyer who specializes in special needs. We've never even done our legal custodian stuff should anything happen to my husband or I. This is not advised!! We're just in denial. Also there is noone we know, and no relatives who would agree to take so it's pretty scary. Don't you just hate this stuff? (shudder)

Sherry

[Guest guest]

Your child does not lose his or hers rights because you, the parents, are his or hers legal guardian. Believe me, we have been through it and know what is what here. Andy votes and does whatever he wishes within reason and that is where the parent comes in to decide for our child what is in his best interest. Andy tell us what he would like to do, etc. It isn't that we just decide what is what for him. It has nothing to care for himself like being out on his own. His Doctors have all stated that Andy needs supervision. That's another thing, you need a statement from your Doctor to get guardianship. Guardianship has nothing to do with taking any of his rights away. Andy is not able to care for his own money matters either other than what we give him in his wallet to spend and he spends what he wants. He picks out his own clothes, his own shoes and he just is quite the shopper, I tell ya. We protect him from having someone steal his money

from him so he doesn't carry anymore than $10 at a time. Our kids are forever kids although there are some out there who attend college yet not on the level you might think. It would be a certain course. It is in your childs best interest to not be left to him or her self because they could be totally taken advantage of by the creeps of this world and we know all about that too. Our attorney advised us to get legal guardianship and we care about our child enough to want the very best for him. No one knows what is best for him more than his own parents or family. Anyway, to each his own but we have been to hell and back on that guardianship and legal conservatorship ordeal and we did the right thing! I don't know what rights anyone would ever think were being taken away from a person anyway whose best interest is being watched out for just like you would anyone you love. However, that is what the group home stupnagles had the nerve to accuse

us of. Well, parents have rights too and we certainly have the right to do the right thing for our child who cannot make a lot of decisions for himself, bright as he might be. It would be like taking a little child and leave them to fend for themselves, we just couldn't do that to our sweetheart. He is a very happy young man as anyone who knows him can testify to. We have had a will made out and updated several times with his sisters (who fight over who will get him) named as guardians and joint conservators. That is what their brother wants and he did choose us. He was appointed an Attorney at m (sp might be wrong here) Andy could be swayed to do anything by outsiders he thinks he can trust so we have to protect him from that too just as we would any child who was underage. So, there's our story on guardianship and conservatorship. Next page!gldcst <gldcst@...> wrote: <<I have been told that you do have to have legal guardianship.>> I believe there are different choices. Your child may have you as a guardian but also retain certain rights like voting etc. Or you may go for total guardianship. We're getting ready to meet with a lawyer about this. If your child is high functioning (from my limited understanding) you may be depriving him/her of the kinds of equal rights etc. that we all hoped to have for our kids by obtaining total

guardianship. In our case it is necessary but I believe there will be many among you who may choose a different approach. Again, find a lawyer who specializes in special needs. We've never even done our legal custodian stuff should anything happen to my husband or I. This is not advised!! We're just in denial. Also there is noone we know, and no relatives who would agree to take so it's pretty scary. Don't you just hate this stuff? (shudder) Sherry

[Guest guest]

I'd like to know more on this too. I've been told when they turn 18

they could make purchases, etc. from folks and it would be legal if

they don't have a guardian. Also I can well see them stopping you

from going in for medical things if they are 18 and you are not

guardian. They do that for my other kids at 18 a lot of times.

Other times they act like you're the parent --I think it has a lot to

do with who's paying the bill. If my husband's insurance is, they

give me a little more say-so/respect. If not, well . . . maybe I'm

skeptical or something. Anyway, this will be a hard one I think.

Going to court or whatever at age 18 to get guardianship. Anyone

with more details on this. I like to be prepared.

Priscilla K

--- Webber <hrw@...> wrote:

> I have been told that you do have to have legal guardianship.

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> On Tuesday, July 4, 2006, at 04:17 PM, rdavis900@... wrote:

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> >

Priscilla Kendrick, married 28 years to Darrel and parents of 9 kids including

Evan, 10, born with Down Syndrome and Spina Bifida

" My strength is made perfect in weakness. "

" My grace is sufficient. " II Corinthians 12:9 KJV

__________________________________________________

[Guest guest]

Wow Trish, thanks for the info on the guardianship. On another list where most of the kids are coming up on 18 they were talking about 2 different types of guardianship...one of which would lose your child's right to vote etc. I'm sure you're way ahead of us with this game so this is great information. I'll pass it along. So Andy can have you as his legal guardians and still be able to vote? Do they ask any questions about mental competency when you apply for guardianship? You say you need a doctor's letter? Shoot, I've got so much to learn. Glad you're here.

Sherry

[Guest guest]

Wow, I had no idea we needed to be thinking about doing this! So much is happening at the same time for us this summer. Meetings with school district about partial days at high school, jeff is 2 transition camps, was in a meeting where parents were talking about group homes and assisted living homes, and now guardianship? And I thought when Jeff was small, carting him every day 50 miles for early intervention and back and forth to dr's appointments and therapy was rough! And I was a lot younger then! Where do we start on this guardianship issue? Betty in TN, wishing I was 17 years younger right now!

Re: Anyone out there with an adult child my Andy's...

Dear Trish,

Thank you so much for sharing your experience with Andy. He sounds like a great guy!! And thanks for the emphasis on getting custody as we will soon be dealing with that issue. is 17 and I'm just learning that I need to establish guardianship in December (the month before her 18th birthday) or I am in for big trouble. Perhaps this would be different for a very high functioning child...I think you can establish partial guardianship or something, not clear on that...but with who is virtually nonverbal and in many ways still a toddler mentally we need to establish full guardianship. One of my friends let this slide and she ended up at a hospital appointment with her 18 yo daughter who is autistic and the doctors would not let Mom into the examining room. They finally allowed her in after her daughter told them that Pat Sajak was president but it gave her the push she needed to get the legal work done.

I am sooooo happy you are here and sharing with us. We really need you!

Sherry mom to DS/Autism in Florida.

[Guest guest]

Priscilla, take it from my husband and I. You don't want to wait until your child is 18. It needs to be done a month before in the event someone tries to go over your head and say your child doesn't need a guardian or they try to get guardianship which is something you won't want to happen. Your child will be on their own if he/she become's his/her own guardian. Our Dr. and our attorney helped us and there was no question for us as we scurried to get guardianship of our son as others were trying to take over in our place behind our back. The fight was on. I hope you have read all I have written and assuming that, no more needs to be said. Everyone has to make their own decision and it all made sense to us to be our son's guardians rather than someone else who wanted to steal from him and they were not family members or friends. They were just criminals trying to get a free ride off my unsuspecting son and others special needs kids. We are forever

grateful to the person who brought guardianship to our attention and I know my son is too. Just protect your child every way you can because if you don't, the snakes are out there waiting to pounce.Priscilla <priskend1@...> wrote: I'd like to know more on this too. I've been told when they turn 18they could make purchases, etc. from folks and it would be legal ifthey don't have a guardian. Also I can well see them stopping youfrom going in for medical things if they are 18 and you are notguardian. They do that for my

other kids at 18 a lot of times. Other times they act like you're the parent --I think it has a lot todo with who's paying the bill. If my husband's insurance is, theygive me a little more say-so/respect. If not, well . . . maybe I'mskeptical or something. Anyway, this will be a hard one I think. Going to court or whatever at age 18 to get guardianship. Anyonewith more details on this. I like to be prepared.Priscilla K--- Webber <hrw@...> wrote:> I have been told that you do have to have legal guardianship.> > > On Tuesday, July 4, 2006, at 04:17 PM, rdavis900aol wrote:> > <image.tiff>> >> >> > Priscilla Kendrick, married 28 years to Darrel and parents of 9 kids including Evan, 10, born with Down Syndrome and Spina Bifida"My

strength is made perfect in weakness." "My grace is sufficient." II Corinthians 12:9 KJV__________________________________________________