Exhausted....what a week!

[Night Owl Mama]

The 4th of July visit went well. No outbursts of anger or anything. He enjoyed spending time with the kiddos and was respectful and helpful. A little trouble filtering and a few slipped cuss words but unrelated to us (he accidentally threw away a soda cup that had a coupon on it he wanted, that sort of thing). And he tried to rant about how much pollution fireworks cause but I told him to just shhh and enjoy it. Lol.

The next day I met with him and his team, a counselor and case worker. Son shares that he was diagnosed with Borderline Personality Disorder. This isn't surprising, but I find it pretty devastating because my brother also had this and I know what it means, and how hard it is to treat. We get to talking about long term plans. My son thought he would be able to stay in the Crisis Recovery Unit until he got into Job Corps (which takes about 30 days) but when it was made clear by the team that the plan was to discharge him before that, he flipped. He yelled profanities and left the room saying he was "outta here". He slammed the door so hard a picture fell off the wall onto the caseworker's head. She wasn't hurt and her and the counselor were completely calm. I, on the other had, was mortified. He went and packed all his stuff and left AMA. The whole episode triggered some PTSD for me. Me and hubby went out for the day to get my mind off things.

A couple hours go by and son calls, telling me he had left. (As if I didn't know?) I tell him to go back, that he should not leave treatment and he is making it worse for himself. He agreed and they called me about 2 hours later saying he was checked back in.

I didn't hear from him again until yesterday evening. He called to ask if I have a copy of his HS transcripts. I don't. He said that is all he needs for Job Corps. He said it will be about 2-3 weeks before he can get in and he is being discharged Tuesday (this was Friday). He asked if he was stable on his medications and had a safety plan in place, could he possibly come home. OMG, I was not expecting that and it sort of stunned me. Then logic took over my brain (praise God!) and I said, "Son, the last time I saw you, you were violent, slamming a door so hard a picture fell of the wall and hit the caseworker. Did you know that?" He said he didn't. I continued, "I am sorry but the answer is no. I cannot allow you to be here in this house. I have young children and I must make their safety my priority." He said, "Yes, that is why I said if I was stable..." I replied, "But how am I to know you are? What guarantee do I have that won't happen here? You had said you felt amazing on your new medications and you still had a violent outburst. I want nothing more than you to be well and stable, and that will ensure that you can continue to have a good relationship with us. But living here with us, that is not a risk I am ever going to take again. I am sorry, but that answer will always be no." He said ok and I asked him to continue to keep me updated.

Friends, that was so so hard, but I know it was the right thing to do and I feel peace about it. I know he needs to remain desperate in order for him to push through the barriers and get help and keep stable. Even if he was stable and non violent, to let him live here could return him to the behavior patterns of apathy and excuses again. And knowing he has Borderline (BPD), I recognize medications can only do so much. There are deep, deep behavior and perception issues that will need to be addressed before his behavior can be expected to be consistently stable. And I know there is a strong possibility it will never be.

 

[Copabanana]

could he possibly come home

The one thing I would like to say is this: (If you have absolute confidence that the person who diagnosed him with Borderline (BPD) is competent and experienced, then disregard) Diagnoses have a huge element of subjectivity involved. Clinicians call this "clinical judgment." But it is subjectivity nonetheless. That your son received this diagnosis is one person's opinion. Quite possibly it will turn out to have been a true thing, but only the future will show that this is true, the kind of future that your son makes for himself. At this point there are so many things that could make him appear to be borderline, that in my mind, would have to be ruled out, to make a diagnosis of a personality disorder.

That your brother has this diagnosis makes this very real to you--what could be--for your son. But "could be" is not "is."

I think the Job Corps option is wonderful and I hope your son follows through. Take care.

 

[Night Owl Mama]

My brother had a host of other issues, including untreated bipolar and chronic addiction. It's hard to know what was responsible for what when I think back on my interactions with him. What I do know is that my son's ups and downs and dysfunctional behaviors persist despite the best treatment and medications available. He is so much worse without medications, but never totally better on them either. So it make sense that he does have a personality disorder, which as I understand, isn't responsive to medications itself. It's just another label, but if it helps me understand and better define him and our interactions and gives me some guidelines to follow, I am thankful for it.

I hope the Job Corps works out too. Son will have to work hard to be cooperative and not blow it, and he knows it. He told me not to let him quit, no matter what. As if that is in my power. I told him he is the only person who can do that, though I am happy to remind him of his request. My experience so far is he is totally blind to consequence when enraged, and it doesn't take much to set him off, though again, he is less reactive when properly medicated. All I can do is hope and pray his mind stays clear enough to see the big picture.

 

[BusynMember]

I think you were very brave.

 

[A dad]

Its not like its not understandable why was he mad when the crisis recovery team told him he will be discharged before the job corps and his difficulty in filtering such emotions. Its really a curse to be mentally ill no matter the country but at least he lives in the country who is among the one with the most amount of help for people who are mentally ill.
In here if you are mentally ill if your parents will not help you the person will live on the street for the rest of their life once they become a adult. Which is better then before as they put them in certain homes where they starved to death and even killed. So yeah a curse.

 

[Sister's Keeper]

NOM,

You are a smart and brave lady, you handled that extremely well, you should be proud.

 

[Copabanana]

All I can do is hope and pray his mind stays clear enough to see the big picture.

Every single thing you say makes sense about how you are approaching your son's future.

I have a 27 year old who went to Job Corps when he was 18. I loved Job Corps. He, not so much. I allowed him home afterwards. I do not believe it helped him, and the subsequent years were difficult for me. Nothing I did really influenced the decisions he made or the direction his life took. It took him 9 more years before he would decide to behave in a manner roughly approximating a socialized person. But he decided, not me.

He needs support and wanted support, but would not take the responsibility to curb himself sufficiently or hold himself responsible for doing his part. It is for these youth that Job Corps offers so much promise. But my son was too young and possibly too vulnerable or damaged.

He is with me, now. It is hard. My heart goes out to you--and to me. We have no all around good choices, it seems. Just as you say, the one that gives peace. Keep posting. It has helped me.

 

[Night Owl Mama]

I don't blame him for being angry either. There really isn't a lot of options for him. Every thing we asked the caseworker about was a dead end. Yes he has autism but he has a high IQ, so he won't qualify for a group home or assisted living. It doesn't matter that he has low adaptive skills and a consistent pattern of being unable to manage his on medications. He *may* qualify for SSI, but it takes time and will likely require an attorney. There are housing vouchers he could qualify for more quickly in another county, but his mental health support team and Job Corps is here. I am sure he is not the only young adult on the spectrum who needs supported living but has a high IQ. There is just nothing out there for kids like him. He is too "high functioning " to qualify for services and too "low functioning" to make it without them. It's very frustrating for all of us.

 

[Kalahou]

Night owl ~~ You show amazing strength and insight. That you feel peace with your words and actions makes it right for you. I believe your son knows your love and understands why you are taking the necessary stand. I believe the best to work out for you and your son, just taking one day at a time.
Kalahou

 

[BusynMember]

Night Owl, his Iq doesnt matter. Its his inability to function. Its not about I Q. Whoever told you that is wrong. My son has an average I Q and I have a high verbal I Q, but we both have disabilities and get services. If he qualifies for SSI he also qualifies for services. You need to contact your Dept. of Aging and Disabilities and make an appointment. with them. If you haven't spoken to them, you dont know his options and are misinformed. Do not let the "aging" part of this department scare you off. They help the elderly AND disabled of ALL ages and are vital to getting your son help. I never used an attorney. You shouldn't have to. We didnt go to court. Social Security and Disability granted it. Your son has many problems and should not struggle to get help if you contact the RIGHT people.

Unless you talk to the right people, and that is NOT friends, family, educators or psychiatrists, you will not be able to help him. Most people don't understand what qualifies as a disability. They will tell you you need to go to court. That is nonsense.

You do need to have official medical documrntation. And you need to go through the right channels. Just filling out a form online is not enough. Remember...Aging and Disabilities.

I wish you luck.

 

[Albatross]

Night Owl, what a day. You handled that like a true champion. How lucky ALL of your children are to have you in their lives!

 

[Night Owl Mama]

SWOT, I totally agree he needs and deserves services, regardless of IQ. Unfortunately, the person giving me the information was the social worker associated with our county's behavioral health and has a lot of experience in these matters, and it is her role on the team to connect him to available services. She said that he must have an IQ of 70 or less to be considered for a group home. He can qualify for services under SSI, they just tend to dismiss it on the first try. Assisted living services through Medicaid would only happen after he had spent 90 days in a hospital or nursing home, neither applies. medication management may be available but he would need to come in to the medication clinic daily to be dosed. There was no home health visit program for that. I think it's stupid. Yes, that is an expense, but it's cost effective over repeated hospitalizations because of medication mismanagement. I will look into other organizations and see if there is something we may have missed. We have him on our private insurance in addition to his Medicaid.

At this point I told him that society expects him to use his above avg IQ to compensate for his disability. There are apps he could use on his phone for medication reminders. He came up with the humorous idea a while back of inventing a shock collar that won't let him leave the house or lay down in bed until he had taken his medications. A little brutal, but hey, there might be a market for that. This is a kid who is driven when he wants/needs to be. I think him getting a clear understanding of how critical medication management is to his success is the key. We rescued him from the consequences of mismanagement far too often, and he knows we are done doing that. So I am hoping this will be the catalyst for a lasting change of priorities.

Thank you all for the kind words. I am feeling strong but I still hurt for him and who knows what the next phone call will bring. Just taking it one step at a time and staying busy is all I can do right now.

 

[Sister's Keeper]

My mom uses a medication reminder app. It's called something with the word "care" in it. She only takes blood pressure medications.

The app also allows you to enter in all of your other medical info, history, allergies, docs, emergency contacts, medications, etc.

NOM, I think, so far, you are doing right, Also check with your state's Division of Developmental Disabilities. I realize that services vary from state to state, but here (NJ) it has a lot of programs for young people with an Autism Spectrum Disorders (ASD) diagnosis helping them transition into independent living.

You know, the thing is, a large majority of people with mental illness have compliance issues with their medications, it seems to go part and parcel with mental illness, your son has the added burden of Autism Spectrum Disorders (ASD).

I wanted to say, though, no matter what your son's "official" diagnosis is (and those with Autism Spectrum Disorders (ASD) and mental illness usually have a mixed bad of them) I think you are handling this situation in the best way possible.

Having a diagnosis can help you and maybe him better understand why he acts the way he does, and black and white thinking and out of control emotions are a indicator of Borderline (BPD), it really doesn't change how you need to deal with him in terms of the safety and well being of your family.

The discussion you had with him was great. It sounded like just the right balance of empathy and limit setting.

LOL. I had to edit the board changes the abbreviation B.P. (without periods) to Bipolar Disorder. I meant blood pressure.

 

[BusynMember]

I guess it is different there. I would still double check. But my son doesnt qualify for a group home either. However that is because he has no mental illnesses and can take care of himself in his own place. I think your son would absolutely qualify for a group home where we live because they are mostly due to mental illness. I know a lot of the people in our group homes and they have normal IQs. It is pathetic that somebody like your son can't get a proper support system where you live. But our mental health system is terrible. I dont need to tell you that. It makes me sick and very sad.

 

[Night Owl Mama]

It is very wrong indeed and every person in that room agreed how unfair it is for young adults like him to fall through the cracks. He was angry at the team but no one there was his enemy, just the message bearers of the reality he is facing. Society has yet to find a way to support these high IQ, low adaptive skill young adults on the spectrum. He does have the added burden of other mental health issues, but I know comorbid conditions with Autism Spectrum Disorders (ASD) are very very common. He is not the only young adult who needs services that don't yet exist. With autism rates rising all the time, he certainly won't be the last!

 

[Childofmine]

I think you handled that amazingly well. I hear such strength in your post and understanding of your role in his life.

I am so sorry there seems to be no direct path or answer for him right now. I wish so much we had better pathways for people like him and it is wrong that we don't.

Hang in there. We're here for you.