New to the forum and looking for support/suggestions

[Vincent Wells]

Just discovered you guys here today, and am grateful to have a place to talk with folks that are in similar situations. Our difficult child son is 16, going on 17, and has been under treatment for ADHD, ODD, bi-polar since age 4. We lived in rural areas for the first 7 yrs. after the initial diagnosis, so most of the suggested treatments were of the "pill it and kill it" variety. Public school couldn't deal with him, programs and treatment centers couldn't cope with him, and counselors and psychiatrists have given up on him. He has spent time in three RTCs, and the last one here in Cleveland released him back to us because they had made no progress with him, and felt there was nothing more they could offer. (They also managed to set him back academicly by 3 yrs.) We've had him in the local Positive Education Program for schooling for the last 2+ yrs., and he's earned no high school credits, while running away from and refusing to go to school at every opportunity. Last year, after watching some Discovery Health specials, we had him tested for Autism, and the specialists returned a diagnosis of Pervasive Developmental Disorder (PDD)-not otherwise specified. Now, we suspect he meets the criteria for CD, but his current psychiatrist is resistant to "slapping another diagnosis on him". The problem, as I see it, is that if no one makes the official diagnosis of CD, we can't get the more specialized therapy that the condition calls for. We meet with the psychiatrist again tomorrow, and we have a couple of other support team members sitting in to help us get things settled, hopefully.

Our son's major issues:
Academic - barely functions at elementary school level, despite a high IQ, and will not apply himself to school work. Has had several "honeymoon" periods with new schools, then begins avoiding or running away from school.

Homelife - Shunned by peers his age, due to immature behavior. Refuses to do chores, or rushes through them when pressed. Constant demands for attention, and to have special food/games/toys/electronics. Destructive to his own belongings and other people's. Throws tantrums whenever he cannot have what he wants, or is faced with consequences for negative behavior. Acts out in stores and other public places, often to the point of our being asked to leave if we cannot control him. Often disrupts housework, or my homework for night school classes, and has caused my wife to miss multiple doctor's appointments. I was unable to work a part-time job of 25 hrs. a week because of regular calls from school and home about disruptive behavior.

Interventions - We filed under Unruly Child statutes with Juvenile Court last year after major truancy problems, violent behavior, and multiple hospitalizations. A change of schools and several months of improved behavior before our court date resulted in the magistrate tabling the charges and leaving him with us and in the community.

Our son is 6 ft. tall, 150 lbs. and easily able to hurt me or my wife if he chooses to do so. His recent tactics have been to demand hospitalization when we try to enforce consequences for negative behavior, and suicidal behavior if we resist taking him to the hospital. We are finally getting the county Board of Developmental Disability working with him, but I fear that the lack of decent treatment/diagnosis early in his childhood has allowed his CD to progress beyond the ability of anything less than round-the-clock care and intensive behavioral therapy to improve things.

Meanwhile, my wife's health has been steadily deteriorating. Our son was her miracle baby, as it took three years of failed efforts and finally giving up to the Fates before our son was concieved. Her first husband refused to father a child for her. Her depression and anxiety were not diagnosis'd or treated properly until our son had been under treatment for several years for his problems. She cannot deal with conflict, and tends to withdraw when he becomes contentious, although she has been trying harder to be firm with him since his return home from the last Residential Treatment Center (RTC).

As for me, I discovered my own condition (Asperger's) while researching our son's problems, and understand that it has impared my ability to deal with him effectively too. I tend to be more harsh with him, because I see no reason for him to behave the way he does, and to not change his behavior to benefit both us and him. I've also tended to respond to him as though he was deliberately bullying me and my wife, because I had major problems with being bullied as a child myself. My wife and I are both recieving individual counselling, but we have not been able to do family counselling because of limited resources, and our son's unwillingness to participate when it has been tried before.

So, this is where we stand right now, and I hope to be taking part in the forums here regularly. My wife and I have had no family support, no one willing to take our son off our hands, and spotty support from agencies and programs in our area, as many of them have suffered funding shortages. I want to keep our son in our home and get him as much help as possible in the fifteen months we have left before our son turns 18, but I also need to finish school myself and start my new career, and get help for my wife's medical issues. We tend to hover between exhaustion and overwhelming frustration, and the toll on our relationship as a married couple has been high. For now, encouragement and support would be greatly appreciated, and as new issues come to the forefront, I will be grateful for any advice or suggestions you may have. And I hope to be able to return the favor for some of you as well. Thanks for lending an ear (eye?), and giving us somewhere to turn and someone to talk to.

 

[JJJ]

Welcome! It sounds like you have been advocating for a long time for your son. Did any of the docs try any medications with him? Did they have any effect?

 

[DaisyFace]

Hello and Welcome--

I don't have a lot of info (and certainly cannot make a diagnosis) but it seems to me that "Conduct Disorder" is usually considered a diagnosis for which there is very little help...and until recently, it could not even be diagnosed in a person under the age of 18.

What sort of therapy are you looking into?

 

[Vincent Wells]

@Tri-J - Our son has been through the whole gamut of stimulant and mood-stabilizing medications, several anti-psychotics, and none of them have worked well, if at all, and often caused worse problems. He's currently on Depakote, Geodon, Cogentin (hedging against side effects from the Geodon), and Propanolol (for frequent headaches). He also takes Imetrix for occasional migranes.

We have long suspected that he was displaying symptoms that medication would never have any effect on, and the fact that none of the medications have had a positive effect, coupled with the steady degeneration of his behavior, is what leads us to believe that his ODD is progressing into CD, and heading for Antisocial Personality Disorder once he hits 18, especially if he carries out some of the behavior and plans he talks about now (experimenting with alcohol, running off with his present "girlfriend", trying to care for himself without prerequisite life skills).

 

[Vincent Wells]

@ Daisyface - What our son needs, in my opinion, is counseling from a therapist who will address his behaviors and motivations without allowing him/herself to be misdirected or stonewalled, as I believe his present counselor is. Weekly sessions with the current guy for over two years now has provided no breakthroughs, no improvement, and my son comes away from most sessions with stuff he's printed off of the counselor's computer, or made from paper during the session. I think he's out of his depth, to be honest.

My hope is that our county Board of daughter will have a therapist on tap with direct experience with kids like my son, and maybe some history of success in bringing them to acknowledge what they are doing to themselves and their families. It will take a very committed therapist to filter through the distractions our son creates at will and get him to look at himself honestly.

 

[gcvmom]

Welcome VW (I hope this is not your real name -- if it is, you need to change it here for privacy's sake). This is a wonderful community of support with a wealth of collective knowledge and experience.

I'm sorry your efforts for your son over the years have not resulted in the progress you'd hoped for. How incredibly frustrating. I would think that living in a more metropolitan area now you should be able to find a larger number of therapists who might be better qualified to address your son's issues. Have you looked at any of the teaching hospitals in your area? They tend to have better coverage in specialty diagnoses for a whole host of illnessnes, both physical and mental. For example, I googled "teaching hospitals mental health cleveland" and looked at University Hospital. On their website, I went to the search bar and typed "autism" and was given a list of providers who specialize in this disorder. You can also try "Pervasive Developmental Disorder (PDD)" or "Conduct Disorder" -- you get the idea. If nothing else, it's worth a call to them to find out what they recommend your "next step" should be.

 

[HaoZi]

From what I've been able to find out, Pervasive Developmental Disorder (PDD) and Autism Spectrum Disorders (ASD) people often have atypical reactions to medications, which I've run into constantly with my difficult child. Have you gotten books on explosive children yet? You'll see several recommended here, by various authors. I'm not sure if Ross Greene's "The Explosive Child" would be applicable at his age or not, or if someone has a better suggestion, but it might give you some good insight.

 

[Marguerite]

HaoZi, the book is applicable widely. I've applied it to school meetings! Collaborative Problem Solving is a marvellous system to try and form my observation, works even better as they get older.

Given the family history indicating Pervasive Developmental Disorder (PDD) in some form, my bets are on that at least as a working hypothesis.

I would look around for someone who specialises in diagnosing and treating adults on the spectrum. A friend of ours has just been diagnosed in his 50s. We suspected it for years and it was his exposure to our kids that had him thinking he needed to check it out.

Someone who treats adults could also be someone who could help your son.

Read "Explosive Child" - if you really are Aspie as you believe, then the logic of it should appeal. But if, like my husband, you can't "get into it" then let me know. I wrote a summary of the method as a form of book review, to help my husband understand it.

Try to get your wife on board here too, at least to read the posts. She might find it helpful to be able to read the issues, condensed as they need to be when you put it in writing.

Marg

 

[susiestar]

Hi and welcome! The first thing I would like to ask is that if your screen name is your real name, PLEASE change it! This is for your safet and security and your family's. While we are a very supportive community, we deal with mental illness and letting people know your last name is a "no no".

I think it is great that you can recognize your Asperger's and how it has affected your life and relationship with your son. I also sympathize iwth your wife - I have some pretty severe health issues that are continually getting worse and responding less to treatment. Please make sure that your wife gets some help because chronic illness can cause depression all on its' own (who wouldn't have depression when they hurt so much so often, Know what I mean??). I know, in my case, that the stress and physicallity (sp?) of dealing with my own Aspie did a LOT to make my health worse. I do NOT let him know this or admit it because he would put much blame on himself. I CHOSE to be on the "front line" and it is not his fault, Know what I mean?? But even at 19 my son would NOT believe this or cut himself any slack from the guilt.

You say that the RTCs put him behind in education. Was he refusing to do the work or did they not focus on it? It sounds like they did not have much of a clue, which a lot of us run into.

I realize you are in Cleveland, but have you ever been to any of the other Children's Hospitals in the state? We lived in Cincy and had excellent treatment/help from the psychology and psychiatry depts there. I can send you the name of a person who helped us greatly there. Her online info at the hospital says she sees younger patients but she might have someone she could recommend. In many ways she put us on the path to finding what we needed to do to learn to be the parents we needed to be for our son. I just wonder if they might be a different resource with new ideas.

Many of the behaviors that make up conduct disorder, at least as described in the DSM, are behaviors that can also be "normal" in teenagers because the way their brains are developing. I am NOT excusing the behaviors, just saying that conduct disorder is not technically supposed to be diagnosis'd until after age 18 for this reason. MST, aka multi-systemic therapy, is currently the recommended therapy for conduct disorder as near as I can remember. You may want to look for this in your area or via google.

Given the financial situation, which must be strained with the inability to work and your wife's health, have you tried to get the state chidlren's insurance for your son? I know it is not the best, but it can be a huge help. Where we live it covers many, many things that private insurance does NOT, and without the many rounds of appeals we endured with private insurance. My son spent 4 mos in a psychiatric hospital (more of an Residential Treatment Center (RTC), but not called that) and that insurance program paid every penny. In fact, later when we had private insurance we could not FIND a program that would take him - they ALL would have taken him with the state insurance.

Given your son's interests and age, have you ever drug tested him? It might be a wise step. I recommend getting a kit from Walmart and mailing it off. I see a pain mgmt doctor and he explained that these are done in labs that only or primarily process drug tests and are far LESS likely to return false positives, and to fall for the various ways that the kids try to beat the tests if they are using. MAny people with mental illness/developmental delays, etc... self medicate to help try to "fix" whatever they perceive as their problems or to try to cope. This becomes even more likely if there is any history of drug/alcohol problems in the family (including extended family). If he is using alcohol or drugs it is likely to mean that his other medications are not able to help.

Your son has a history of violence. Have you and your wife ever pressed domestic violence charges on him? You have every legal right to do so. You can also press charges for destruction of property and/or vandalism if he damages your home/property. I do hope that he does not have a driver's license as it would easily become a weapon if he was angry. I think OH requires certain school performance/attendance for underage drivers, so that might help if he is pushing to get his license. Even if your son has not been arrested for DV, you and your wife need to contact the local DV center for help. What he is doing when he is violent is abusing you. This includes physical, mental, verbal and emotional abuse - not just physical. A DV center will help you with free counselling, group and private, and they can offer to let your son join a group for abusers and also receive private therapy. I know one of the things that really helped my son stop abusing my daughter was when the psychiatric hospital put him in a group for boys who abused women. My gfgbro is an undx'd aspie who is abusive. He learned a lot from the men's program at a DV center.

DV centers have other resources also, including financial ones and legal ones. They may be able to help with more than just the therapy. Even if they cannot, both you and your wife are being abused. I don't know if it will help your difficult child, but seeking help from them will help you and your wife. I urge you to seek out this kind of help. Your son's abuse of you is NOT YOUR FAULT. PERIOD.

You have between 1 and 2 years to really reach your son. He is already old enough to refuse medication and many types of therapies unless court ordered. One way to get the courts to help is to keep calling the police when he is out of line at home. It is HARD to do this. Both to call and go to the court. But at age 18 the ONLY influence you will have over your son is bribery in the way of refusing to give financial/emotional support if he doesn't do what you want. He is also then going to b e at the mercy of the real world. The world isn't going to let him be violent when he doesn't want to do something - they are going to toss him in jail. Most likely not the first time, or even the third or fourth - but it WILL catch up with him. Right now you have a chance to have him get help IF you can convince him to not only go and get it, but then to USE it. I wish there was more available to you and your son. Sadly, there isn't.

Many programs will not accept him unless he is WILLING and will not lock him in unless it is court ordered. This makes getting help for HIM even harder. This means that you now have to begin to look at what is best for you and your wife. Are you willing to let him live at home after age 18? What are you willing to pay for after he is 18? His phone, computer, a place to live, food, clothing, transportation, medical care? You must start to think about this now, so that you and your wife can be on the same page (or close) by the time that he is 18. Some of us have had to tell our kids that they cannot live at home anymore. Some have set their kids up in apartments, sent them to relatives, to friends, etc... and some have had to give them a list of shelters and put their belonging outside. It is heartbreaking, but at some point they have to take responsiblity for their choices and actions. We cannot tell you the right time to do it, or what to do. We can support you as you work to help your child assume adult responsiblities and as you do all the other stuff that is part of life iwth a difficult child.


whatever your choices, we are here. We know that not every parent is ready to do things at the same pace, or at all. That is one reason this group is so incredible and supportive. There is a LOT of knowledge here, so read as much as you want to/need to/are able to. I would like to invite your wife to join us. Many of us have similar physical challenges as she does, and we understand. It will also help the two of you to communicate more clearly as you post and read what each other posts. She can ahve her own screen name or use yours if she prefers.

Sending lots of support. Come back often!

 

[BusynMember]

Sounds like a lot of Pervasive Developmental Disorder (PDD) to me too. These kids/adults are wired differently and can't really change their behavior/who they are. They need serious interventions and very often do not respond to typical therapy.
Good luck, whatever you decide to do. Welcome to the board

 

[DDD]

Adding my welcome. Don't have anything additional to add to the others..except..seeking a diagnosis of CD doesn't seem like a wise choice. There are no medications or magic cures for CD and I don't know of any benefit for him or for you all in adding that diagnosis. In most cases that designation is not assigned until adulthood in hopes that the behaviors are treatable and not lifelong.

Glad you found us and hoping you can find the appropriate help for your son. It's a hard raod for the whole family and most of us understand the range of emotions that you and your wife are expriencing. DDD

 

[TerryJ2]

Welcome ! Glad you found us.

I am so sorry about your son. It certainly does sound more like Pervasive Developmental Disorder (PDD)/autism than bipolar, from your description.
One thing I would recommend is a consistent sleep routine (I just finished reading another thread that related to that). Another is to continue with-the present therapist because it sounds like you've finally gotten a good one. (I can't believe someone diagnosis'd bipolar at age 4. Did I read that correctly?)

I'm so sorry that your son was set back academically with-his RTCs and other stays. He will catch up, though. One thing that works well for my son is not to have him do every subject every day. Or even every week. Maybe do math for a whole week and then history for a whole week. These kids learn differently, that's for sure.

 

[TerryJ2]

Welcome ! Glad you found us.

I am so sorry about your son. It certainly does sound more like Pervasive Developmental Disorder (PDD)/autism than bipolar, from your description.
One thing I would recommend is a consistent sleep routine (I just finished reading another thread that related to that). Another is to continue with-the present therapist because it sounds like you've finally gotten a good one. (I can't believe someone diagnosis'd bipolar at age 4. Did I read that correctly?)

I'm so sorry that your son was set back academically with-his RTCs and other stays. He will catch up, though. One thing that works well for my son is not to have him do every subject every day. Or even every week. Maybe do math for a whole week and then history for a whole week. These kids learn differently, that's for sure.

What was he like as a baby

 

[Marguerite]

A good sleep routine can really help. SAD is also something you need to consider - you can provide your own light therapy if you get him up early each morning and turn on the lights - strong white fluorescents. And again at the end of the day, strong white light. But then cut the light exposure late in the evening. ie no gaming into the wee small hours (something we're struggling with, with difficult child 3).

As for study - we found, with both our boys, that they did a lot better working on one subject's topic until that topic was finished. They made much better progress and their learning was more holistic - the other mental connections they have to make to learn effectively, are more easily made if they're not stopping ad starting too much. I would get my boys started (sometimes getting started could take a while!) and then just shove food at them at various intervals so they could keep working.

Both boys had huge gaps in their education. difficult child 3, we realised, had simply not learned anything at school, ever. Not a thing. He had been learning at home, a little, on days he was home sick. But it wasn't until he was in Grade 5 and spent half that year home, with me giving him my own version of an informal education, that mental connections began to be made. In grade 5 difficult child 3 could not find Australia on a map of the world or a globe. He did not understand anything about countries or continents. We would go for a drive and he would ask, "Are we in another country now? How long would we have to drive to get to America?" when we had only been driving for half an hour. We would go on holidays and he would think we had moved house permanently. By the end of Grade 5 he had a good idea of how to navigate around the world; he understood what products are found in what countries, he hd a better idea of different cultures and languages (even knowing that different cultures and languages existed was a breakthrough). And meanwhile his mathematical ability was once again getting a chance to develop as his brain was capable.

A bright child will resent obstacles to his education. You also need to recognise that an Aspie's response to communication is disordered and immature. They learn by imitation, and it is YOUR example that they will follow. Also, Aspies can learn, and continue to learn and adapt, lifelong. You can learn how to be the best parent your son needs, despite your own Asperger's. In fact, your Asperger's could work in your favour.

My Aspie friend's therapist told him that adult Aspies adapt almost completely, and superficially can pass as normal. However, some things cannot adapt - sensory issues and anxiety. Anxiety is something you can learn to handle to a certain extent as you get older, but the kernel of it is always there and ready to surge to the forefront if circumstances become exceptional.

Marg