<p>Lmkh-- Agree with what everyone else is saying. Please do not listen to what anyone is saying. Also, about finding someone trustworthy to talk to. And, finally, depending on where you live, see if there are any other support services or organizations (such as respite) that can help you get a break from time to time to take care of yourself… hugs</p>
<p>One day at a time, Lmkh. You are a remarkable person who knows that you are putting your effort where it counts. It is easy to lose sight of that with all you are facing now. Trying to cope with the unexpected, on top of daily demands, seems like so much. I hope there are supports you can access and that it is possible to tune the scolders out as you navigate self-care, as well as care of your children. Blame has no role in this equation. Finding a way to make the days workable is the way forward. I know that it can be hardest to seek support when it is most needed. As others have said, it can make all the difference and you deserve it. </p>
<p>Please get the support you need and deserve, lmkh.
We have “only” one disabled child and at times the challenges and stress are incredible.
My DH and I remember to ask for help from each other when it gets bad for one of us.
We also have an amazing parent group of special needs children to draw on for direction with specific issues.</p>
<p>Lastly, I have the support of a wonderful therapist who “gets it” and has helped me cope immeasurably.
There is no way I could handle this stuff on my own and you shouldn’t have to either.
Wishing you the best and sending many hugs.</p>
<p>Yes, I got to a therapist when I need to talk. It does help a lot. I also go to a couple of support groups. This is too much for one person (or a couple) to go through alone. I keep finding more people who have severely mentally ill kids, too! When I hear about them, I call them and see if they would like to get together. They almost always say yes, and we talk for HOURS.</p>
<p>I don’t have a disabled child but my dearest friend has a son with a mental age of 7 as well as some other issues. He turns 18 in a few weeks. I am curious to know if those of you with developmentally disabled adult children have or do not have guardianship. My friend was planning to do that on the advice of the school and son’s counsellor. She learned she and her ex could do shared guardianship and thought that was ideal. But ex is adamant that there be no guardianship and has said he will fight her in court if she tries to do it. (To be clear, he is not fighting her because he wants guardianship but because he insists there be none). She is worried sick about son’s future but is backing off as she knows from past experience how vicious the ex will get if she pursues this. He has the money to drag it out and will not hesitate to use dirty tactics (last time was horrifying - things like “anonymous” reports to CPS - investigated and dismissed). After talking to the ex, even the counsellor who thinks there should be guardianship has advised her not to fight him on it as he has made it clear how nasty he will get. </p>
<p>Those that don’t have guardianship, does it work out ok? I like to be able to offer her some reassurance but am lacking knowledge or experience in this area.</p>
<p>swimscatmom - We obtained guardianship after S turned 18. It seems fairly routine for families of children with this level of disability.</p>
<p>Who will be making decisions wrt educational placements for the next couple of years and for where the S will live once he ages out of educational entitlements? I could be wrong, but unless the S is in residential placement after educational entitlements end, the ex would be responsible for continuing child support and it is possible that he wants to avoid this situation? </p>
<p>As my S’s legal guardian, I attended iep meetings until he aged out of school, applied for benefits (including MR waiver for adult funding) on his behalf, and continue to sign off on medical releases and attend IHP meetings for adult services. I also have the option of naming individuals who are permitted to visit my S, if I recall correctly, but nobody outside of immediate family has been interested in visiting him, and he does not even recognize any relatives except for parents and siblings because none have been involved in his life, not because he would be incapable of recognizing them. It is my understanding that if i were not guardian, the state would appoint a guardian to accomplish these tasks.</p>
<p>I think it is routine where she lives as well. The school and counselor were treating it as and expecting it to be a routine thing. My friend’s initial worry was who would be guardian (they have joint custody) & She was pleased when she learned it could be joint. But all the ex keeps going on about is “not taking son’s rights away and that he wants to vote”. The school and counsellor don’t seem to know how to react. </p>
<p>I don’t know how all the decisions will be made without guardianship in place. That’s what she is so worried about. What would cause the state to step in if the parents don’t do anything?</p>
<p>I do suspect most of it is about money. That is what triggered the last court battle and it was nasty.</p>
<p>My wife and I are guardians. There is a list of things checked off where our daughter can be in charge of her life. We are in charge of her health care, finances, who she can marry, etc. She can vote for whoever she wants. The restrictions on the disabled vary by the disabled’s conditions even if there are guardians. </p>
<p>Let the kid vote. The mom should agree with her ex. He won’t vote anyway. But a parent wants to be in charge of the major things. The ex should agree to this. </p>
<p>Your friend should get a hold of the guardian form. The ex may agree when he actually sees the form.</p>
<p>He should but he won’t. He made it Quite clear to her and the counsellor that he will fight it tooth and nail and drag her through the courts for years. A lawyer that specializes in guardianship told her If he fights it, it could take years. I could understand if he was fighting her because he wants guardianship, but he doesn’t. I don’t think she’ll fight it with the memories of the last time. She thought she could, but Once he started threatening her with all the same nasty things he did last time, she realised she couldn’t.</p>
<p>Him voting or not voting wasn’t something she was thinking about.</p>
<p>I’ll suggest her getting hold of the form. Worth a try. </p>
<p>We have shared guardianship of my DD, my husband, myself and her adult brother.
We all appeared before a judge, right after her 18th birthday.
Any one of us can authorize medical care for her which was my main concern.</p>
<p>She has voted in every election, the guardianship doesn’t affect that.
Our daughter can and does make many of her own day to day decisions.
But we need to have final say on the big things that she cannot understand.
Can’t imagine not having established the guardianship for her.</p>
<p>Does guardianship differ by state?
Is the father afraid he will be held financially responsible?
That’s not how it works after age 18 in our state.</p>
<p>It’s hard to tell what he is thinking. One thing he was upset about at the meeting with the counsellor was that he insists it would cost $20k to set up the guardianship. The counsellor told him that is not true especially if they are in agreement about it but he is convinced he is right. (he makes north of $400k a year but bitterly resents the $1k a month child support he pays). There is a trust fund for the boy (young man now) that was set up in the divorce at my friend insistence. She has never touched a dime of it but ex is convinced she wants guardianship to get her hands on trust fund even though she has said she will sign whatever he wants so that the fund is controlled by someone else. She just wants to them to be able to make the major life decisions and be able to deal with school, medical etc.</p>
<p>A lot is about money (in his mind every problem can be solved by throwing money at it). I also think Dad has never fully accepted that his son won’t suddenly catch up developmentally. Something all his money can’t change. He comes from a very demanding high achieving family and they just can’t seem to accept the child in the room vs the child they expected him to be. </p>
<p>I wondered if sitting down with a guardianship lawyer would help, though the counsellor was completely unable to sway him. Maybe a lawyer could reassure him about what he guardianship would mean. </p>
<p>We used two lawyers and it was very helpful. One lawyer was for my wife and me and the other was a lawyer for my daughter to protect her rights.</p>
<p>I think the whole process cost $2,000 or $3,000.</p>
<p>We went through a not for profit agency to set up the paperwork. The paralegals helped us prepare all the forms for court and the charge was very reasonable, maybe $1500 total.
The state required a lawyer to protect our daughters rights, but one was assigned to her free of charge.
He met with our daughter (and us) at our home and submitted his findings to the court.</p>
<p>The actual court proceeding was interesting and brief. The judge addressed several questions to our daughter and she was able to respond easily. I do think the process for our family was (relatively) painless because we had no conflict between us. Our daughter understood she was agreeing to allow her family to make some decisions for her and told the judge so. Her lawyer agreed with our guardianship for her so all went smoothly.</p>
<p>Sounds like the father in your friends case is ignorant and will make life more difficult for his son and his ex.
Is there a case manager involved in his sons care that could persuade him?</p>
<p>No, nothing like a case manager. We thought the counsellor would be able to convince him but he is adamant. I was talking to her today and asked her what would happen after son turns 18 as far as parents talking to the school and talking to Doctors etc with no guardianship in place. She has no idea & is just lost about what to do next. </p>
<p>By the way, the counsellor also said it would be in the $1500 region but he has it in his head that it will cost $20k and didn’t believe the counsellor. </p>
<p>I don’t think it’s a good idea, but I can’t think of even one of the young adults I treat who have had any formal guardianship established. I feel wretched because they end up signing medical consents and I don’t think they understand. Most have a family member at every appointment.</p>
<p>One if my D’s best friends has a 21 year old sib diagnosed with schizophrenia in jail for resisting arrest. So sad and frustrating. Easier to get in to jail than into an inpatient bed around here. I wonder if anyone here has an opinion about the “Helping Families in Mental Health Crisis Act”.</p>
<p><a href=“Redirect Notice”>http://■■■■■■■.com/prvdhmj</a></p>
<p>@shrinkwrap, I don’t know much about the act yet, although I’ve heard of it. What do you think about it?</p>
<p>I accompany my 22-year-old son to his doctor’s appointments if I have any particular concerns, but usually he goes by himself. The doctor is good about emailing me if he sees anything of alarm (as he did this week!). My son has signed health release forms, but I don’t think we need to be his guardians.</p>
<p>@Mary13 I’d like to read the article but it wants me to subscribe to read it.</p>
<p>@Palomina, musicmom mentioned (in post 118) that she was able to read the article by googling the title, “Notes from a not-so-empty nester.” Maybe that will work for you.</p>
<p>@MaineLonghorn - that’s reassuring to hear. </p>
<p>I wrote about this in another thread… A thread that should no longer exist.</p>
<p>So…I am going to mention this here because this is what some disabled people have to go through.</p>
<p>I just talked to this young girl for 30 minutes. She was denied ssi. You know…the program that has so much fraud in it that any healthy person can fake it and get ssi.</p>
<p>Well she did not fake it well. She was denied several years ago. Did I mention that she was born without an anus? She pooped out of her vagina. She has digestive issues. She has been in special education programs her whole life.
She did not get ssi. </p>
<p>This young person is out about $40,000 so far and she will never recover this money, but she has a couple of advocates working with her including her doctor on digestive issues.</p>
<p>I am hoping she gets ssi this year. </p>