In a bad place...does anyone have a crystal ball?

[BestICan]

Hi,

I read every day but don't normally post about our issues. Today I'm feeling a need to unload.

Recently my father committed suicide. He was an unusually brilliant, analytical person who had been addicted to drugs for about 50 years, give or take a few decades of sobriety. He was never really able to connect in a "real" way with any of his 3 wives or 5 children. His funeral was this week, and over and over again, these descriptions came out about my father:
-brilliant/witty
-logical/analytical
-not intentionally hurtful, but left us all in pain as a result of our relationships with him
-never really understood how to love (he'd stated this himself)
-never really understood that words could hurt (he never understood how to validate another person's feelings, always felt that being "logical" should be what mattered the most.)

So, obviously I'm very upset about my father's death, the manner in which he died, and the unresolved issues he took with him. I've got a tremendous support system with friends and family and a great husband, and I am taking good care of myself.

After the funeral we all sat around a family scrapbook which had belonged to his mother. She had saved many things, and among them were many of his report cards from grade school through high school. As we read through them, I got quite a kick in the gut when I realized that his teachers in the 1940's were saying exactly what my difficult child's teachers say about him now. Things like: "a talker! - this is becoming a problem" "very bright but does not accept criticism," "due to his lazy habits and poor attitude, he has not 'earned' these A's," "not motivated by internal factors - is usually motivated when he knows he's getting a reward" and on and on and on.

My mother turned to me with a smile and said, "Does this remind you of anyone?" Obviously she was not trying to hurt my feelings, but of course I was thinking: is this how difficult child will end up?

We've spent the past several days with cousins, many of them close to difficult child in age. He's eight years old, but he's the only kid out of the 7 cousins that needs frequent check-ins from a grownup to make sure he's not doing anything mischievous, regular time-outs for saying something rude, constant reminders to be quiet, keep out of someone's possessions/personal space, etc. He is liked by his cousins but he is different, and it hurts me to say this but he's obviously the one they've identified as the "bad" kid.

I have gotten a bit panicky asking myself the question: "Will he end up like Dad?" "How can I prevent him from ending up like Dad?" "Do I really have any control over this?" And more often than not, I've come down awfully hard on him in recent days. Just so you see that my mom isn't an insensitive person, she felt I was being way too hard on "a tired, overstimulated kid with impulse control issues" (her words) and took him for a few hours of quality time today while I calmed down elsewhere.

OK, he's only 8. But he's unusually bright (I used to say this with pride but now I don't really see the silver lining). He is NOT motivated internally to be nice to other people. He's a talker (especially in the classroom). I love him - he's witty, charming, entertaining. But he's not a NICE kid most of the time, and doesn't seem to WANT to be nice, or have an instinct for caring for people. (He's great with animals, though.) He does have friends and frequent playdates. It's hard to explain, but he's just not motivated by other people's feelings, and that bothers me terribly.

I don't know what kind of input I'm asking for, really. difficult child doesn't have any diagnosis other than the seizure disorder. We were turned down for neuropsychologist testing coverage from our insurance company but I'm going to appeal. He's been in therapy since Kindergarten (he's in 2nd grade now) and his therapist feels he's ADHD but his pediatrician doesn't. Some of you may be thinking Aspie after reading about my father's personality, but I know some Aspies and I strongly don't think this was his particular issue. But I never really knew him when he wasn't using drugs.

Anyway, thanks for listening, and I appreciate any support you can give.

 

[timer lady]

Jen,

I'm sorry for the loss of your father. What a sad & stressful time.

All I can offer is to parent your difficult child as you normally would. You cannot predict the choices he will make when he becomes an adult. While he may be talkative, & some of the other descriptions that you saw in your father's report cards, he is a different individual.

You have already started to find interventions & help for your difficult child. All I can offer is something I believe Fran said a great deal here - "prepare for the worst & hope for the best".

It's what I do for my tweedles - what many of the parents do here for their children. It's all any of us can do.

Again, I'm sorry for the loss of your father.

 

[gottaloveem]

Jen,
So sorry to hear about the death of your father.

I can understand the fear you have for your own son. We worry about our difficult child's anyways. Now you have been traumatized by your dads sudden and shocking death and it kinda upset all the securities you had in your life.

Your dad grew up in a way different era. Kids were treated differently then they are now. You have your son in therapy. As he gets older, you may find out more that can be treated. Don't start worrying now about all the negative outcomes for your son. Just raise and love him like you are doing.

Again sorry to hear about your dads death.

Lia

 

[BusynMember]

Hi there. I'm really sorry about your father. Such a horrible way to lose a loved one.
I'm going to bring up the "A" word. You can't know an Aspie by watching other Aspies because they are so different. But it could be something else. I'm sorry you were turned down for a neuropsychologist evaluation. That's really the best kind. Maybe your therapist can help make a case for you getting one for your child as this type of testing goes way beyond just therapy. I would talk to him and see if he's willing. If he is like your father, in my opinion, it's more than ADHD and he really isn't qualified to diagnose. Sometimes Psychiatarists (with the MD) can tell the difference between psychiatric and neurological problems, but sometimes they can't. Still, if you can see one, in my opinion, that's better than just relying on a therapist.
I have a grown son who sounds a bit like yours. He did have friends (although less when he got older) and was very bright, but didn't try hard in school. He had high anxiety and had to drop out of college. He had serious Obsessive Compulsive Disorder (OCD) issues when he turned nineteen as in he had to count people's words, so he couldn't really listen to what they were saying. Although he is diagnosed with a mood disorder and Obsessive Compulsive Disorder (OCD), I think he could be a tad of an Aspie. He is better than he was when younger, but still on medication (see his profile below). I wish we'd had NeuroPsychs when he was little. He has developed empathy, however, as a child, I didn't see the proper empathy in him a lot of the time. To make you feel better, he's a great hub and doting father now, but he still has his issues.
Others will come along. Welcome.

 

[Marguerite]

How old was your father? When was he born? In what era did he go to school? What sort of understanding was there, for kids who are different or who lack social skills?

What I'm trying to say here - your son is growing up in a different world, psychiatry is much more advanced than it was (although some of us would argue it still has a long way to go).

When I think of this sort of thing, I think in terms of Pervasive Developmental Disorder (PDD) because of the autism in our family. difficult child 1 was not diagnosed when he should have been - in fact, when I asked the specific question when he was 6 years old, "Could he have some form of high-functioning autism?" I was told "absolutely not." Seven years later the understanding had changed sufficiently for the label to now be applied to him. At the same time difficult child 3 was two-and-a-half/three years old, and was immediately assigned the diagnosis that still stands today. So just in those seven years, medical understanding had made significant advances.

I think back a generation or two - for various reasons I was seen by a number of psychologists and therapists as a child and teenager. I had psychometric assessments, occupational 'predictions' (I can't think of the professional term, but I do remember one assessment which involved phrenology, of all things - I was 11 at the time) and nobody at any time found anything diagnostically wrong with me; if anything, I was constantly being chided for failing to perform to my potential. I didn't know why I could not - something seemed to be stopping me. With hindsight I do wonder if I had some Aspie signs plus ADD(inattentive), similar to easy child 2/difficult child 2. I was bullied badly and this did a lot of damage, but socially it was a different world where I had to learn to accept that bullying was inevitable and to also to live the phrase, "Children should be seen and not heard". I was an adult, a parent, before my brain finally clicked into place and I was able to study and achieve at last.

Looking back further - my father in law. He was dyslexic, almost certainly Asperger's. But because he did his schooling by correspondence (aided by a salt-of-the-earth pioneer Warrior Mum) and lived on a sheep station in the outback, he never had to deal with bullying, never got thrown into the rough and tumble of growing up. By the time he had to learn to get on with larger groups of people he was a young man, at last in the city where his parents had moved in the Depression. He didn't cope so he joined the army and served in WWII where his amazing problem-solving skills and knack for inventions helped him survive three or four POW camps.

My cousin - born in 1931 in Sydney, was a genius. It's the only way to describe him. His most obvious ability was in music. His parents recognised this early on and fostered it, nurtured and sheltered him and wrapped him in cotton wool while they arranged for the best tutors. His father abandoned his career in the church to help his son. My eldest sister remembers our cousin sitting at our dining table, aged about 15, sheets of blank manuscript in front of him, as he wrote an orchestral score, line by line, from something playing in his head.

But socially he was a problem at times. He had an acid tongue, he was never very good at modesty nor did he suffer fools gladly. He moved to England before I was born but would often visit 'back home', at which times he turned his mother's life upside down (his father died when I was still a child - I think it would have been mid Sixties). Somewhere in his life he found the time and energy to also qualify as a doctor, but never practised medicine - he was too prolific and popular a composer, at the time.

He wrote a vast amount of music and was widely celebrated, but due to his social ineptitude made a lot of enemies and these days, despite his once world-wide fame, very few people have heard of him. He died five years ago. I am currently trying to track down samples of his music (which can only be described as 'modern classical'). Apart from a recent re-release of a large collection of his composition for piano, nothing currently exists. When he died he was a sad, lonely man.

I am convinced my cousin was Asperger's. He certainly felt an affinity for children with autism and began a world-wide campaign to use music as therapy, at a time when people were still told to put autistic kids in an institution.

When difficult child 3 was about two years old he was showing the same early signs as my cousin. I mentioned this to my mother, that I was wondering if difficult child 3 might have been following in my cousin's footsteps. "Oh glory be, I hope not!" was her reply. "You'll never have any peace, he has been such hard work, that man!"

My cousin and my father-in-law were fortunate to have been sheltered at a time when mainstream schooling would have been horrendous and hampering for them. But even so, they were never understood very well and were happiest when they could order their own lives to their own special interests and abilities.

For whatever reason, your father found the world intolerable. He used drugs to try to break it down into manageable pieces but the trouble with drugs, is that they are very hard to control; soon they control you. In your father's time, in his life, there were far fewer supports, much less understanding, than there is today. Your father never really knew that the way life was for him, need not have been so difficult. Imagine how difficult school must have been, with the degree of strictness there used to be! Now think about what your son's classrooms and teachers have been like - vastly improved.

Your son has a much better chance than your father, of realising as he grows up that being a difficult child is not his fault. He has wonderful intelligence and potential, if he can manage to overcome the difficult child-ness that is currently getting in his way. But he has support, he has understanding, he has you on his side and showing him that there are other ways.

Your father didn't have that. He didn't even come close to having that. And the attitude to psychiatry in your father's day was one of utter shame if you ever had to consult one, plus the barbaric nature (by modern standards) of a lot of the treatments. Even today, I have a hard time discussing psychiatry or psychology with just about anyone of my parents' generation, they are so scathing and negative about it. I am amazed my mother ever allowed me to be seen by psychologists.

The Aspies in my family are also not typical. Aspies we know well do seem more obviously socially inept. When making the movie with the other Aspie/autistic kids, their parents said to me, "Meeting difficult child 1 gives me hope that my son could maybe do that well one day." They were amazed at him, found it hard to believe his diagnosis, they told me (hey, try living with us!)

Jen, you are doing everything you can. Your eyes are wide open. There are resources available. You understand.

Think of your father - there is no way anybody around him could have had the same support, the same understanding. He would have been constantly chastised for misbehaviour, for inattention, for poor organisation and this undoubtedly from teachers and parents alike. Compared to your son, he would have felt so alone, so unsupported - that sense of always being on the outside, looking in. An outsider, never belonging.

Your father's life and those of others like him have been part of the journey that medical science and psychiatry has been on, to get where it is today in terms of better understanding. His grandson can now benefit from this collective knowledge, but for your father, it all took its toll.

Have hope, Jen. Be on guard, and maybe your son can have a much happier, productive life without needing to use drugs to numb the pain.

I am sorry for your loss - it really hurts, especially when it is suicide. But whenever anyone notes the similarity between the grandfather and the grandson, be grateful that your son is benefiting from this greater understanding and support. For people to smile when they say it - it means that today, they understand. Sixty years ago, they didn't.

Hugs, Jen. You're doing a good job.

Marg

 

[BestICan]

Thank you, so very much, for your thoughts and support. I really appreciate the stories of similar people.

I've gotten renewed strength to wrestle with the insurance company - I guess I'll get started again on trying to get the neuropsychologist testing approved.

I'm going to spend this last day with the family and try to keep myself in a patient, instructive place, not a punitive or panicky one. Thanks again.

 

[witzend]

I'm so sorry for your loss. This must be a very difficult time for you and your family.

I guess that all I can offer is that things are very different now than they were when your father was growing up. Maybe your son does have some of the same proclivities, but I'm sure he also has many more opportunities to overcome them than your father did.

No one comes into this world without burdens. Given what we know now, your son's burdens are much easier to lift than your father's were. Don't let it throw you off of your stride. Talk to difficult child's therapist about this, and use it as a stepping stone to recovery.

 

[TerryJ2]

I am so sorry about your dad. How that must hurt.

I can imagine what you must have felt, looking at those report cards and having your mom comment. I felt like I was right there with you.

In regard to your questions:
"Will he end up like Dad?" Not necessarily. In fact, probably not. I agree with-several people here on that issue.
"How can I prevent him from ending up like Dad?"
You're already in counseling and as several people pointed out, we have resources now that your dad never had as a child. You may want to bring up the issue of your dad's death at your next session and spend the entire 45 min. on just that. See what your son says and feed him ideas to get that part of his brain working.
"Do I really have any control over this?" Yes, to a point. You can guide and instruct him but no, you don't have control over his genetics. One thing I have done with-my son is to point out things in real life situations, for ex., if there's a car accident, and I see someone crying, I'll point it out and say, "Oh, poor thing. Car accidents are so scary and sad." I use words that are easy to understand. I also find newspaper articles about kids my son's age that he can relate to. In fact, one in today's paper was about a 10-yr-old boy who choked on a cracker and his teacher gave him the Heimlich Maneuver. Then I ask him, "What do you think of this?" (Better yet, for your son, "How does this make you feel?")
I believer that developing and dealing with-emotions, empathy and compassion is learned, much like any other skill. Some people are better at math, some have innate emotional intelligence. But I do believe it can be taught, and your son is at a perfect age.

Most of us here have issues with-our kids being angry or just being outsiders, and we all have the task to give them the tools to make themselves happy. But we cannot "make" them happy. They have to develop their own parameters and stress levels and learn to self-sooth, and you can help with that. Surely, by knowing that his grandpa abused drugs, your son has an excellent example of how not to deal with problems.
Mostly, I just want to say, thank goodness you're his mom! What a lucky boy he is!
Thank you for sharing with us. This is a great community. Take care.

 

[smallworld]

I'm so sorry for your recent loss.

If on appeal you still can't get the insurance company to cover neuropsychologist testing, you might want to call your local Autism Society to see who in your area is highly recommended for Autism Spectrum Disorders (ASD) evaluation. Sometimes children's or university teaching hospitals have highly regarded autism clinics that can give you a rule in or out. And that kind of evaluation might be covered by insurance.

 

[Wiped Out]

I'm so sorry for the loss of your father.

As for the rest I echo what others have said. No one can predict the future but you are getting help for your son and it's a different era than what your dad grew up in. Sending many gentle hugs your way.

 

[susiestar]

I am so sorry, I cannot even imagine the pain you are enduring. The loss of a parent, then the similar comments on the report cards are 2 stunning blows almost at the same time.

What we know about Aspergers is growing by leaps and bounds. You are able to find info ONLINE about almost anything, when ONLINE didn't exist when your father was in elementary school!

In reading the assessments, Aspie is what came to my mind. I am not an expert (I don't even play one on tv) and am thoroughly unqualified to make diagnosis of any kind.

I would wonder if your son's seizures are controlled. Partial seizures can create a wide range of symptoms and behaviors.

You have access to so many kinds of help for your son. What name they put on it only matters if it changes the treatment (they could tell me my son was pregnant if it would result in him getting whatever help needs, but that is just my belief.).

If you need help appealing the neuropsychologist evaluation denial, the Insurance forum is incredibly helpful.

The way you describe your son is very similar to what many describe Aspergers as. But it could also be seizure related or something else.

Please don't rule out Aspie with-o some very in-depth testing. But don't automatically assume his behaviors are because he is the "bad" kid. MANY things can contribute to his behaviors.

I hope he is seeing a pediatric neurologist. We only had my so-called ADHD inattentive-type daughter tested by a pediatrician neuro because things I learned here. And she is NOT any kind of ADHD, she has Absence Epilepsy. There is a LOT more to diagnosing the problems our kids have than we know.

BUT if your mommy-instincts or gut instincts tell you a diagnosis is wrong, then follow up to see what is going on. A diagnosis of Aspergers can open up a WORLD of help - psychiatric, therapeautic, and even finanacial.

Please be gentle with yourself right now, you have had some very traumatic events.

 

[Andy]

I decided to shatter my crystal ball. Although society is accepting behavioral health as a part of life, there is still a long way to go. I had a hard time telling my parents and my husband that I had admitted my difficult child to a Residential Treatment Center (RTC). It was extremely hard especially since it was so unexpected by even me.

I have worked in an adult behavioral health facility that served a lot of acute patients who were in and out of treatment - just could not be on their own longer than one refill of medications - either didn't have the ability physically or financially to refill medications or because they felt better didn't think they needed the medications any more. I have seen the worse case scenerios and these came through my crystal ball breaking my heart.

I have since talked with well adjusted independent adults who are on medications similar to my son's. They are the true survivors - the people who have or continue to overcome their challenges but still fit well in society.

I love those success stories. So, I shattered my crystal ball and have decided to focus on the here and now. As long as I do the best I can today, I may prepare for but can't expect the worse but can dream and hope and plan for the best.

As stated in previous post by our wise forum members, we have better tools and a greater understanding of mental health issues today. Your dad's generation were probably a lot like my parents, "There is nothing wrong with him that a quick swift in the rear wouldn't cure." We are learning that there are issues that can be controlled through understanding, guidance, and medications. Our difficult children have a hard road ahead, but they can be happy resourceful adults.

What surprised me was most people reacted the opposite of what I expected. My parents were the most supportive. I think it upset husband the most. husband's sister was also more supportive than I would have expected. I didn't get the rotten tomatoes thrown in my face that I expected from a few people. husband refrained from throwing but I could tell he wasn't happy. His only question, "Did he want to go?" "Yes, it was actually his idea."

So, crystal balls are beautiful but we can only see in them what we know and feel today and we certainly can not know what the future will hold.

The best place to look is into your child's heart. What does your heart say about your child? Listen with eyes on the very best of you difficult child. As long as you continue to pull those most positive characteristics out of your child, the future can be promising.

 

[Big Bad Kitty]

Best I Can,

I am so sorry for your loss. Hugs and prayers to you and your family.

In the simplest terms I can think of, your name says it all. Do the best you can. You are aware of your son's difficult child status. You are doing what you need to for him. In other words, you are already doing the best you can to help your child.

He is already leaps and bounds ahead.

 

[BestICan]

Thanks, everybody. Each and every one of you has said something that I hold in my heart. I think there's great wisdom in smashing the crystal ball, it's very good advice.

I'll keep you all posted once I figure out a way to get the neuropsychologist testing in place. Donning armor to call the insurance company this week...

Thankful to have you all in my corner,

Jen

 

[susiestar]

Jen,

Don't forget to post over in insurance, I have gotten WONDERFUL advice from the ladies there. They really can help you figure out how to word things so the insurance co will OK them.

Still pullin for ya!

Susie