new, need to learn about guardianship, coping skills

Discussion in 'Parent Emeritus' started by nerfherder, Feb 4, 2013.

  1. nerfherder

    nerfherder Active Member


    This will be brief as I can, I have to get out and check on a couple very pregnant goats.

    I am exploring guardianship filing for my 17y3m daughter. She is autistic, and behavior-challenged. Food and eating obsessions, mostly regarding sweet foods and anything in the class of foods from which she is restricted. Her diet (as is most of the household where I live) is paleo/low carb, gluten-free, casein-free. She is not on any medications, DEX and I decided long ago that behavioral mod through chemistry is a last resort, and I'm about there now.

    She is on SSI, and if we didn't live and rent on a farm in a small town, we'd be screwed financially too. :)

    I made sure to include "guardianship" in the topic, as in the future I (and other parents) may need to refer to anything shared through forum search.

    Those of you who have done the paperwork - successfully or not - what bumps or snags did you run into? If you had an ex who was compliant and/or supportive of your decisions, were there still legal breakages in the process?

    She's been diagnosed developmentally disabled since about 22 months, Pervasive Developmental Disorder (PDD)/not otherwise specified since age 3, currently identified as Pervasive Developmental Disorder (PDD)/Autism through the school district. I've been pretty fortunate overall with schools and schooling, the only snags came from the brief few months we lived in Irvine, CA which had at the time one of the WORST records of dealing with Autism in an affluent area I'd ever heard.

    She has known behavioral issues in her IEP, the school Special Education department does a fantastic job of keeping everything everything in her day running smoothly. Academically about 1st through 4th grade depending, emotionally about age 4.

    I however am having frequent quiet melt-downs due to paperwork stress and fears, that oh so special feeling of shame - I was taught to be as self-reliant and independent as possible, but with a child who will need Government Support Forever, sometimes it feels like a knife in my gut. The Medicaid paperwork continues to sit in my carry-along, along with a copy of last year's Sheriff's Report (I don't go out with her without it) that confirmed that we are not abusive, but she lives in a fantasy world where she is Magneto's princess daughter of the Island of Jenosha and we are keeping her from her true heritage of cookies, candy, pizza, and her apartment in an orchard full of all the fruits she's not allowed to eat unrestrictedly - and blue hair dye.

    Advice on guardianship filing is a huge plus, if you can. Also reminding me that I am not a failure for having a child that doesn't contribute to society. :)

    Thank you.
  2. InsaneCdn

    InsaneCdn Well-Known Member

    Hi, and welcome!

    I can't contribute anything on the guardianship front, but...

    On this board? We LOVE to point out to other parents that having a challenging child is almost always NOT THEIR FAULT. There is no way you could have parented her differently and ended up with a productive member of society. She is severely disabled. On the plus side, nobody in society would see her as anything else but severely disabled. These are the kind of people that, as a collective society, we understand we "all" have to pull together to help support. If it wasn't YOU who had this child... it would have been a neighbor, or somebody in the next town. It's part of the frailty of how humans are made.
  3. slsh

    slsh member since 1999

    Hi Nerfherder and welcome.

    First off, you never know how your daughter may contribute to society. My oldest (aka Boo) is severely daughter and will never have a job, but I gotta tell you, his smile and laughter and sense of humor and tolerance adds a whole boatload to my life, and society too (when "society" isn't totally freaked out by his nonverbal but outgoing personality, spastic movements, and bright yellow wheelchair ;) ). It's all relative.

    We filed for guardianship the month before he turned 18. It turned out to be a surprisingly simple process. Went to county courthouse to obtain necessary papers and get court date, schlepped over to county sheriff's office so Boo could be officially "served" - a process he thought was entirely hilarious - and then took the papers to his MD to fill out, certifying that he is "permanently disabled." Showed up on our court date, judge took one look at yellow wheelchair, and voila - we're his guardians. No snags, no problems. We were given another court date 1 year later, so that we were "supervised," but that judge just quizzed me on if he'd always lived at home, yada yada yada, and then she said we were good and we don't have to go back.

    So basically, give the daughter diagnoses, it should not be a problem especially if your daughter doesn't contest it (not sure from your post how cooperative she might be about it, but it sounds as if she would not be able to handle her own finances/apartment/life without support - right?). If she does contest it... not sure what happens there. I did find the clerk at our county courthouse to be very helpful, so that might be a resource for you. Also, check online - our county now has all the forms available there, along with instructions.

    Word of warning - my county didn't take checks, LOL. I drove all over creation trying to find a branch of my bank to get cash to pay for court costs (less than $100) and for the sheriff to serve him (I think about $75?). Definitely check about costs before you head out.

    As far as gov't funding, I totally hear you there. I have yet to put Boo on SSI, and he's 24. We have health insurance for him through husband (for 2 more years anyway) and to me it has always seemed intrinsically wrong to get $$ just because he has a disability. We take care of our own, as long as we can anyway. That story may change in 2 years but for now, we just continue on as we have been. Our state offers zero resources for adults with- daughter anyway, so getting him on SSI or Medicaid wouldn't improve the quality of his life. No respite, no in-home services, no adult programming, nada, so no reason to apply.

    Don't stress about the guardianship stuff - really. You absolutely must have it in order to continue to be an effective advocate for your daughter, and it was a shockingly painless process (for us, anyway).

    Again, welcome!
  4. buddy

    buddy New Member

    Hi! My son will also need guardianship and I can see him not wanting it. I asked our disability advocate and she said that his medical history and school records will be enough to make our case, not to worry.

    As far as SSI, My son was adopted so he has an adoption subsidy (like child support) through his state of adoption and I was told I had to pick that or SSI. He is declared permanently disabled so he could receive an MA waiver (special needs children who are adopted through the states are eligible for MA until they are adults, 21 if disabled). I have no problem with his receiving any support that will help him reach his potential. If I was in a position to afford the therapies he needed without MA or his waiver I'd gladly have done it but it wasn't feasible for him. When he is 18 I have to decide if I will switch him to SSI or keep the adoption assistance (if he is living with me still he can have the adoption assistance until 21 too, he will only be in grade 11 when he is 18). I needed to stop working my out of home job to care for him due to his behaviors and that has left me with no insurance for myself but I was able to draw a salary through his waiver as a care provider and am happy to do it regardless of the far different standard of living.

    I guess for me, I am glad for my tax money to go to people like our kids. I'm not as comfortable with some situations (I knew a girl who said she was on disability because she is an alcoholic, not sure if that was true without another condition but that confused me) .

    I am sure my son will do some kind of job but he will not be able to make a living where he can support himself and he will always need supervision. If I won the lottery I would not do SSI but I do not feel badly about it at all.

    There is a lawyer here who specializes in helping people with autism and their families. She recently advised a friend of mine with their son who has mod to high functioning autistm and it was very smooth and simple. She did not even charge them. My friend said they just had to pay small court fees.

    I think some states dont let you do it on your own but national organizations like ARC have guidance advocates for helping to set up finances and living and guardianship for kids who are delayed and or on the spectrum. (guardianship)

    I know here you can have an advocate and take classes (some online) to learn to manage these things.

    Welcome! Glad you could join us....
  5. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I have guardianship and my son wanted me to have it. It was easy as pie. You should try to get a caseworker to help you. I didn't have to fill out many forms. A social worker came out once and talked to me and Sonic. Then we went to court. Then I was his guardian. He is on the spectrum and high functioning. He will probably always need a guardian for his money and maybe to make sure he gets the medical care he needs, but he is mostly independent.

    You daughter is on government support for exactly the reason that we need it...she is disabled. It's nobody's fault and I wouldn't worry about it. I'm sure, through the years, you've paid your fair share of taxes. Don't think about stuff that maybe your dad or mom put into your head. You do what is best for your child. Hugs!!!! :)

    PS--My son also has a full time job...just won't be able to make enough to support himself, but he works his tail off and I'm very proud of him!
  6. recoveringenabler

    recoveringenabler Well-Known Member Staff Member

    Welcome. You're getting great advice, I can't add anything, I just wanted to say I'm glad you're here and you're not alone. You're doing the best you can under difficult circumstances, and you've likely felt alone and overwhelmed many, many times, you've come to the right place, we know how you feel. Hang in there, take it one step at a time, be kind to yourself, get support for YOU, find ways to find joy and peace and carry on with your mission. Many gentle hugs coming your way..............
  7. nerfherder

    nerfherder Active Member

    Thank you, everyone.

    First, I was right! Fleur went into labor just before I drove off on an errand, Housemate Blacksmith was finally unattended (except by The Two Year Old) watching the kidding - and she had three! Our first triplets! One buckling and two doelings, all are nursing pretty well. Not too surprised by the triplets, Fleur was one of a kidding of four - and if you wonder how you can keep up with your kids, imagine what it's like to have three or more kids and only two teats. They figure it out though, and they're cute as buttons. The buckling (boy) even started trying to play with his sisters at only a couple hours old, he tried to rabbit-jump and fell right on his nose.

    That brings us up to 18 goats, and we still have 9 does waiting to kid over the next two or three months. Most are due between now and March, we have two latecomers who are probably going to kid April or May. There, I'm finished bragging now.

    We practice "access control" with the kiddo, if she's not in her room she has an adult responsible for her at all times. She's broken into the root cellar to steal apples a dozen or more at a time, and is quite capable of slamming them in minutes. (Even with no apparent unmonitored time, she somehow managed to hide 18 apples and half a pound of our dried fruit under her blanket yesterday.) Her teachers have learned to never leave food on their desks when she's in class, she has a full-time aide to keep her from trashpicking food or sneaking it out of the class fridges (which are now all locked) and her schoolbus teacher, who is a friend of Housemate, will let him (and us) know if she's eating on the bus - driver and bus aide are not allowed to take things from students you see. And since the only food she gets at school is what I send her to school with (in a see-through lunch bag, the only thing she has to carry with her) they know what she eats, and what she isn't permitted.

    She is a confirmed pilferer, and I figure someday she's going to get in Serious Trouble for it, when she's no longer a cute kiddo whose mom is making her pay for what she snuck out of the store. No idea how they'll manage that when she's in an ISLA home, once her name percolates to the top of the waiting list.

    I hope she never figures out that there are males on the planet who'll give her any candy she wants if. You know?
  8. DammitJanet

    DammitJanet Well-Known Member Staff Member

    I have you had her checked for Prader willi syndrome...I think that is the name of the syndrome where people simply cannot stop binge eating everything they see to eat. Her constant eating reminds me of that. It often goes along with other mental illnesses.

    I do think you need guardianship of her because people will take advantage of her once she turns 18 and you have no way to stop it if you dont have guardianship.
  9. nerfherder

    nerfherder Active Member

    She had a full kariotype as part of the CHOP/Children's Seashore House assessment, and they ruled out Prader/Willi. (They also did a sleep-seizure test.) Her situation I wouldn't consider full Pica - when for example I shared with a friend the Moth Ball Incident, she said "Yeah, I remember doing that once as a kid. They taste kind of minty and crumble in a neat way in your mouth."

    These days she doesn't eat non-food. She will eat anything that tastes like candy, and pick anything with gluten/dairy she can find out of the trash, or - last week her school aide put away a volleyball and came back to find her picking the leftovers out of a baggie she'd pulled through the ventholes of a neighboring locked gym locker. Kiddo is fast, and sneaky, and a dreadful liar. :)

    (It was actually funny. Visiting my mom in SoCal, we were in the house for not more than 5 minutes, my mom ASSURING me she'd made the house safe for Kiddo when out walks Kiddo from the guest room with a box of moth balls, munching away like they were, well, peppermint bonbons. Hello, Poison Control! She ate only 3, and they gave me instructions on what to do, and she had the nastiest diaper rash ever from that. No joke, it could have killed her had she gotten any further into the box. As it is, her diapers smelled like camphor for about 3 months.)
  10. Siobhan Harper

    Siobhan Harper New Member

    You've gotten some great advice about guardianship, and I can't add anything there. However, please, please let yourself off the hook for being "a failure for having a child that doesn't contribute to society!" Seriously?!

    Most of us with challenging bio or difficult child kids have control issues, in that we want to "fix" everything, which is completely impossible and will eventually drive you to your own, personal hell. But nerfherder (I love your name!), unless you sat around, pre-pregnancy, and actively manipulated strands of DNA, you are totally NOT responsible for your child's disability! Far from being a failure, you have spent your life looking after her, doing your best for her, and you're still doing it...preparing to see that she is cared for once she reaches the legal age of majority. My gosh, there are lots of people out there who would call you a saint! I won't do that, because I know from personal experience that, as loving and responsible parents, we simply do what is needed for our kids. I have an extremely troubled difficult child (grown now and still has/causes enormous problems), and I spent years feeling like a failure because I couldn't make everything better. Years of therapy have finally helped me begin to change that perspective, but it's a battle. The only difference between you and me is that I went out and fetched home my difficult child and all his problems; theoretically, I could have avoided the consequences. As best I can tell from your posts, you gave birth to your child; you got dealt a hand that you in no way chose. You have devoted yourself to making the best of the situation for your child; that is NOT failure!

    Just a word about gov't. assistance: it exists specifically for genuinely disabled persons and their families. There is no shame at all in accessing all the help available to you. You are not bilking the gov't. or the taxpayers. Your child has an authentic need. Personally, I don't know anyone who would begrudge or look down upon a person in your position tapping into every available resource. You're not trying to take help to which you are not entitled. Doing all you can to help your child is right and proper. Shame has no place in your life; please don't make your already challenging circumstances worse by beating yourself up!

    God bless you and your daughter; may you know peace.