Difficult Child adulting...Big Fail

[ksm]

so last night Difficult Child called for a ride home from work, husband drove the couple miles to bring her home, about 9pm. He gets there, then she says her coworkers are going to a movie and she begs to go, since she is an adult and all... I really didn't want her to go, as today is a school day, and she has to go directly from school to work.

I told her if she goes, she had to get herself up and ready for school on time. And be responsible for bathing, washing hair, and getting uniform clean to wear today. Well, she came home at almost midnight. Did manage to get up and dressed for school. No shower, hair not washed, uniform not washed. And...I took her and little sis to school.

I didn't mention that she didn't take her work clothes and put them in the car...so when I pick her up at 3:30, we will have to drive home, she has to change in to her dirty work clothes, and try to get to work by 4pm. We live in fairLy small town, but it will be impossible to get to work on time. She is a hostess at a restaurant...

It took all week to have her complete the social security form to see if she can get benefits...she is so scattered. I wish I could have made a videotape of her dealing with the form. Practically in meltdown mode. Questions like, do you need help bathing? Of course she wrote no. Which is kind of right, except she "forgets" all the time, same with washing hair. The question about financial capabilities...yes, she can count change. She didn't think she needed help managing money. I told her she really should put down that she loses or her money gets stolen often! She "lost" the cash from her last two pay checks, as she is an adult now, and I can't tell her what to do with her money nice she works.

Sigh...a never ending battle.

 

[Childofmine]

Ksm, it sounds like you do a great job with this situation with your daughter. It also sounds somewhat typical, even though more extreme in your situation with her challenges that you have listed on your signature.

Yes, sigh. So glad she is working and also that she has friends who want her to go to the movies with them! I know it's hard to navigate all of this.

Hang in there! Hugs and Happy Friday!

 

[BusynMember]

Why don't you fill out the forms? She may not even realize her own deficits. I filled out the forms for my son.

 

[Kalahou]

Why don't you fill out the forms? She may not even realize her own deficits. I filled out the forms for my son.

I agree with SWOT.

There were some things I did for my son, just to make it easier for myself in the long run, felt it was being good to me, to save myself more stress.

... For example, for my own peace of mind, I wanted to get my name off of a joint bank account with my Difficult Child son. The bank would not remove my name unless son signed the paper and gave a copy of his ID card. He did not have a current ID card, even though I had been hounding him for umpteen months, so I drove him myself to the ID card office and paid the $7 and waited for him to get it, so I could make a copy and take care of getting my name of the account. I also completed the form and had him sign it. ( I did this for me.)
... Also son did not have any health insurance, but he qualified for the medicaid type insurance, so I printed off the form and filled it out and made him sign it, and sent it in for him. I did this for my own peace of mind / for my own sake, at the time.

 

[TheWalrus]

I did it, too - and they have you fill them out over and over and over. If once had her in meltdown mode, then the repetitive nature of having to re-write and re-send the same information, talk with case managers and consultants over and over will send her over the edge. I don't meltdown and I was so glad when it was all settled so I could quit dealing with it. It takes months of dealing with on a regular basis.

 

[ksm]

I guess I was just following the instructions on the packet - it said she was to complete...I had already received a packet that I had completed and returned. Her behavior is really not so bad. I am just frustrated that the case manager and others think she is doing so great that they plan to discontinue services at the next meeting in June. Because she is doing do well!! Not! I am working overtime, which I am willing to do to help her succeed. But once she moves out, it is a recipe for disaster.

She forgets everything! Not organized enough to wake up with enough time to clean up and go to school. Forgets to get ready for work.

If they stop services, she loses her medical card, which is secondary to ours. We have quite a few copays, and the DBT classes aren't covered by our insurance. We probably can't continue them without secondary ins. It is over $100 a week.

She tells the mental health staff her plans, and they think it will happen. Oh yes, she is in the nursing program at the community college. No, she isn't. She hasn't completed her FASFA application or actually enrolled. Yes, she is doing well and enjoying her job. nO, there are times she cries and carries on that she doesn't want to go back, other employees are mean to her.

That is what I am frustrated about. No one sees this from my view point.

Ksm

 

[BusynMember]

My son saw a neuropsycologist who was trained well to asses him, a teen who had been exposed to drugs pre-birth. He did testing, not talking to him. He felt the pre natal drugs pre birth were very important and caused neurological damage and autism. He wrote a report that guaranteed Sonic would get adult services. He understood the sometimes hard-to-detect differences in his thinking and how it affected him. Honestly, even Sonics psychiatrist did not do his degree of testing. He didnt test at all really and misdiagnosed him.

I would think just knowing your child was exposed to alcohol and drugs in utero would give your professionals a clue. This affects our childrens brains!!

I had Sonics assesdment when he was about to graduate so that he did not fall through the cracks like so many. Maybe it would help if you got a fresh neuropsychological evaluation. Make sure its a good one who understands the damage caused by alcohol and drug use in utero. We had zilch trouble getting Sonics services continued. Its a matter of what somebody like a neuropsychologist says, and should not be what OUR kids say. Sonic would have said he was fine too.
Sonics growth and function has improved drastically due to his services. He is actually functioning so well that he has exceeded all expectations as a working, independent living, kind, beloved young adult. He even socializes pretty well now, at least with people he has known for a while.

 

[TheWalrus]

It has been my experience that at the first "sign" of "success," the process begins to roll them out. They get rubber stamped, sent out, and room made for the next one. The rug is pulled instead of a gradual, supported, step-by-step plan that helps lead to true independence. Thus begins the cycle of a life in and out of mental health care and other support services. It showcases our lack of true advocacy in our society of those who need mental healthcare, drug rehabilitation, or other adult protective services.

Yes, I do see it from your perspective - because I also live it. The case workers, psychologists, physicians, and other professionals across the desk? Not so much. Maybe a few, but I am sure they are burned out by the system quickly.

 

[ksm]

we had a neuropsychologist exam about 4 years ago. I had to jump thru insurance hoops to even get it done. I don't think they would pay for a second one. But, we didn't get what I would consider a good exam. Basically she thought Difficult Child and I needed family counseling... We did not get any good useable info...

We got the waiver for Medicaid because her behavior had deteriorated, then she took a handful of pills.

Last fall I did get her in to a FASD clinic and they diagnosis her as static encephalopathy, alcohol exposed. But the psychologist we see now uses DMDD, depression and anxiety. Professionals want to skip the SE diagnosis. Some have asked me if Difficult Child had brain scans to prove it. I have tried to explain to people how she can't finish anything, lives in the moment, can't plan or organize.

The FASD clinic just jaw a panel that reviews their records, had us comp,eye questionnaires, interviewed us, took photos of her face and computer analyzed it. They gave us a packet of info, and told us to apply for social security disability. They don't work with patients after diagnosis. They had suggestions...

Others just see a cute, articulate young woman... Ksm

 

[InsaneCdn]

They gave us a packet of info, and told us to apply for social security disability.

What does her care team say about this recommendation?

 

[ksm]

They said it was good to apply before she turned 18, that she will probably be turned down, but if things get worse, we have already started the paper trail. KSM

 

[GoingNorth]

Nearly every one who applies for SSI (this is what your daughter will be applying for as she hasn't accrued enough time on the job to qualify for SSDI) is turned down on the first try.

Remember to fill everything out with the worst day ever in mind.

 

[BusynMember]

We just brought the neuropsychologist repoer for diagnosis. Sonic never went to therapists. His school also helped.

Its been four years. Time to visit Fetal Alcohol Syndrome (FAS) clinic again. Bet anything THAT is why she cant function. Thats brain damage. It doesn't go away. The other diagnoses are becsuse of tha Fetal Alcohol Syndrome (FAS). This type of situation really riles me up.

Going North, disabled adult children dont get SSDI. They get SSI and Medicare and usually Medicaid and other helpful services as well. It is not like an adult who suddenly becomes disabled and has a work history to determine how much they get. Apples and oranges.

The adults who bowl and play softball with sonic all have ssi. Its given as a continum from high school and is not hard to get. Your child just needed to be known to have had issues, usually from birth, such as prenatal drug or alcohol exposure or a cognitive deficit or autism. I do know of one girl who was born "typical" but had a traumatic head injury that rendered her cognitively disabled and she also got ssi.

 

[GoingNorth]

SWOT, I WAS talking about SSI in my post. Perhaps I should've been clearer.

I draw SSDI, but i have gone through the SSI/Medicaid process with friends or a family a few times.

SSI isn't as easy to get as it used to be, and they are becoming more rigid about passing it out unless you were rec'vg some sort of services as a child.

 

[BusynMember]

Oh, sorry. I read too wuickly.

Sonic got services as a child so it was no problem for him to continue thrm, also certsin diagnoses pretty much assured them. Mood disorders and processing disorders wont get you services. ADHD is udually not seen as a serious enough problem...youd have to fight. The things I mentioned are automatic if the neuropsychologist chimes in about the services.

Aldo a therapist eont pull as much weight as a neuropsychiatrist. For a whilebi was involved in an active group of parents eho advocated for disabled adult kids the so I kinda learned the ropes. Any sort of prenatal substance abuse combined with an inability to function at a normal age level should be enough to get ssi.

 

[GoingNorth]

OK. Not to worry SWOT. I went back and looked at the post in question, and I could've done a much better job of clarifying my point.

SSDI is hard to get, especially if you are dealing with MH issues. It took me three tries, with the help of a lawyer, and i had to go before a judge and team of evaluators.

husband got his on the first try, but he was diagnosed with a terminal illness. He'd been drawing military disability since the time of his discharge as he was 100% disabled as regarding his ability to be a soldier. That had no bearing on his ability to work in the civilian world. He worked long enough to get his quarters in before becoming too ill, but wound up drawing on my SS as my earnings were higher.

I didn't become disabled until 2008. My one beef about it is that I wish Medicare paid the same benefits that Medicaid does, ie: for dental and vision, and the very low medication copays. The only reason I can cope with Medicare is that I've got ChampVA medical coverage to handle drugs and what Medicare doesn't cover.

 

[ksm]

The neuropsychologist tevaluation was 4 years ago. Even after talking to her about the prenatal drugs and alcohol, we didn't get an accurate diagnosis. I will find my copy later, but if I remember it was mainly anxiety and depression...and "a lot of kids mature later in life..."

The FASD clinic was about 6 months ago, and the only place in the state. The way I understood, they just diagnosis. Each Friday, the panel of 6 or 7 professionals would see 1 or 2 patients. I guess if you lived there, maybe you might have a therapist or psychologist that you could make an appointment with. But the distance is too great for us. The FASD clinic is part of the county health department. I was told that we would be seen, with or without insurance. They took copies of our insurance, but I never got a bill. The psychiatrist said she was trained in Washington state at a FASD clinic place...I have heard the name, but can't think of it now. One of the premiere places...

I don't think our insurance would pay for another neuropsychologist exam... It took two years to get the first one done. I was told without insurance it would be about $2000.

Now that she is an adult (18) there might be more options for finding a neuropsychologist. Before, there were only four in our state who would see a child! KSM

 

[BusynMember]

Bad neuropsychiatrist ,ksm. try one from a major university center, even if you have to travel. I know, trust me. Not fun. Fetal Alcohol Syndrome (FAS) should be enough for ssi. It is organic brain damage that impairs thinking and decisionaking and often memory and impulse control.

 

[GoingNorth]

University medication Centers or medication schools are best. Don't forget that multi-disciplinary exams are another option. This is where several specialists in various neuropsychological areas each screen the patient within their area of specialty.

in my opinion this is better for older patients as the little ones do better with a single person they can form a rapport with.

I had a MDE in my 40s as part of a family study on the heredibility of autistic disorders.

Because it was part of a study, my experience might not be the norm for evaluations.

What happened is that my niece was being evaluated and happened to mention that she had a bunch of family members who were like her.

Let's just say that they were very happy to get their hands on the clan, though my mother was a bit non-plussed at being diagnosed as an Aspie in her seventies (and adamantly refused any interventions, LOL).