Discussion in 'General Parenting' started by Winnielg, Mar 13, 2013.
Is there a forum for parents of Aspergers/Bipolar kids?
That's us!! Tell us about your child!
I just responded to the post about one parent's child always reverting to physical threats. That is our life all the time now.
My son is 17 years old and was diagnosed with asperger's when he was 6. He has received fantastic services thru the school district with his IEP since the 1st grade. I am not even sure where he would be now without that base, in addition to the YEARS of external therapeutic services. In the beginning of middle school he was also diagnosed with ODD and the aggression, menacing behavior and threats began. We begun to deal with the police and a service NYS provides called Mobile Crisis, several times per year in response to scary threats (8th grade) at first and then as each year passed our son has physically assaulted either myself or my husband many times. I am the main target. Last year after yet another assault against me where he threw me up against a wall among other things, we decided to have him committed to a psychiatric facility. It was that or have him arrested. As I am very familiar with the criminal justice system, I knew this is really not the place for a spectrum kid. He spent 15 days in a facility - which I am told is a long time - and was released with an additional diagnosis of bipolar. He is takes quite the assortment of medications at this point - lithium, lamictal, abilify and now wellbutrin. His rage is a bit better but he feels that he does not really have to follow the rules of our home and is mostly oppositional for the sake of being so most times.
We have been seeing, in addition to his regular therapist and medication management person, a spectrum disorder specialist, as a family once per week (since the May 2012 assault). Things are always up and down - mostly down. We used to seize upon the up times, but our energy is mostly depleted so it is harder to do so. We have been working for the last few years on executive function and adaptive behavior skills with the goal towards adult independence. He is even in a different HS this year in a special BOCES program for spectrum teens. He had a full psychological last year which included many tests the school did not typically do. The results are disheartening. He falls into a gap. His cognitive behavior is HIGH - more than two standard deviations above the mean, but his executive function and adaptive behavior is alarmingly low - all other tests falling more than two standard deviations below the mean. Adaptive behavior and executive function is living life - hygiene, organization, getting from A to B, etc. These skills are far more important that just have high cognitive ability. And will prevent him from being independent without a lot of work on his part. He fights us and all supports put into place every step of the way, every day.
All of this is NOT working. As we approach the potential end of HS - he is a senior - things are getting worse with the threats of violence happening all the time. With a zero tolerance policy for this behavior now, we are hoping we can last until the end of June when school ends. At this point and after another incident last week, my husband wants him out of the house by the end of June. I agree as I am no longer safe in my own house, but obviously feel so conflicted.
We have been working for over a year to get services set up for our son in the event that we get hit by a bus, so to speak, when he is an adult - services to help coordinate care. Hopefully these will be able to be put into place soon.
I guess I really would like to hear how other parents are dealing with transitioning to adulthood with a child who really cannot safely continue to reside in the home.
I tried to keep this short. Thank you.
We understand... with "our" kids, there are no "short" stories. Most of us could write a trilogy or more.
I'm not in your situation - mine will (eventually) be able to function, and we're not dealing with violence... others around here will have experiences that are more relevant. I just wanted to welcome you to the board.
You might also want to post your question over on Parent Emeritus... not that your child is out of the home yet, but the parents over there are more likely to have experience with that transition.
I've been there. My difficult child, who is now 18, is also Bipolar and very likely Aspergers. He is not on medications because he left the group home he was in and stopped taking medications in October. He's homeless now. In a shelter bc we can't let him live here. When he impulsively left the group home in Oct and went to another state he left behind all of the services we had worked so hard for for years. Now he's suddenly back here in NJ and has no services and it's chaos. I'm so sorry I don't have a happy ending story for you (trust me - I wish I did) but in my opinion when these kids, who are so defiant and so headstrong, transition to adulthood it doesn't get easier. In my case it's 1000 times more difficult bc I can't "make" him do anything he doesn't want to do. Not like I ever could anyway but now I have no authority at all. I'm sending you lots of supportive hugs. I'm so sorry you're going through this and I wish you the very best!
Hi and Welcome!
Like IC, my kid does not have those specific challenges (he is already living independently and his issues are currently more mental than neurological, though he has interesting and even contradicting assortment of spectrum and ADHD flavours), but there are others who have more experience with those issues. I just wanted to say hi and glad you found us.
My son is nineteen and on the spectrum and doing great...no rages or behavior problems and will live on his own with some community help. Sounds like your son will not be independent as a young adult and I'd start looking into services. Many spectrum kids need help as adults and your son is not stable yet and it's unrealistic to expect it to happen by eighteen.
I'm thinking maybe he's not getting the right kind of services. Are you sure he's bipolar? Many Autism Spectrum Disorders (ASD) kids get that diagnosis. when it is just a part of Autism Spectrum Disorders (ASD). Do you think he needs all those medications or that they are making him worse? My son does better medication free. Is he better than he was when he was young? My son was a terror when he was a toddler but with intensive Autism Spectrum Disorders (ASD) interventions he calmed down and is actually a pretty calm, easygoing young adult. Psychiatric help doesn't really always help Autism Spectrum Disorders (ASD) kids. Autism Spectrum Disorders (ASD) is not a psychiatric illness. It is a neurological difference. It is not the end of the world if a spectrum kid needs some help as an adult. It is more important the adult be happy, productive, working and have friends, which community services can help with. I don't know if my son will be independent some day, but he's a happy young man and will probably stay that way either way.
I wish you luck
I like MWM's story better!!! lol So much more positive than mine! I hope you know I wasn't trying to discourage you or be negative. Just being honest and sharing my experiences you. Still sending hugs and support for a happy ending!
Hi Winnie, I wrote a long post for you with my Kindle then my son got out of therapy and I accidently deleted all of it! ARRRGGG Hope I can do better now, lol
I am so glad you found us, partly for selfish reasons, (misery loves company???, no not really).
I hope you find this group as emotionally uplifting as I do. Even if stories or advice is hard to hear, I have not met anyone here who has not had their full heart in it. I have had people here who happened to be up very late bail me out of despair, while fighting in an ER for appropriate placement for my son....These folks really do get it.
And there is certainly a group of us who have kids who have assaulted us. I am among them.
My son is also on the spectrum and he too has adaptive scores very very significantly lower than his ability. Unlike your son, my son tests borderline cognitively though. Still his adaptive scores are lower than the fourth percentile and even compared to his ability he is very very low. I totallly agree that life skills and adaptive behaviors are far more impactful on their life and future.
I was meeting with our home psychologist yesterday and we were talking about some things that you might relate to. He had just gotten a referral for a child who has Fetal Alcohol Syndrome and the message said, .... Hi, my son has ODD, ADHD and Fetal Alcohol Syndrome (FAS)....and went on from there. He has since talked to her and the county is hiring him to coordinate the providers. Why???? Because his company works with kids like ours, who have multiple diagnosis. and serious behavior challenges. He said after talking to this mom it is clear that the focus of treatment has been on treating the symptoms (the ODD, the ADHD) and no one was looking at the big picture issue, the FASD. You and I do have services for our kids with Autism Spectrum Disorders (ASD) but I wonder if you, like I have found that if you ever have to have services in the mental health system, they feel obligated to add another diagnosis. Last year, after a medication reaction requiring hospitalization, the doctors felt compelled to add possible mood disorder to his diagnosis. Well, moodiness and the up and down swings that he has are classic symptoms of the brain injury he has as well as his Autism diagnosis.
What our home psychiatric said is that regardless of the diagnosis....they have had better success when they help people see that it is not that these kids actually have ODD or ADHD as a separate diagnosis ( not always, just typically) but rather that they have a developmental condition that has oppositionality, defiance, aggression, mood swings, attention problems, hyperactivity, etc. as symptoms. Sometimes the symptoms are also related to other symptoms that go along with those diagnosis...like motor planning problems, auditory processing problems, etc.
He did NOT say we dont address those issues. He said that every single source working with the client has to work from that umbrella perspective. So, the behavior people, the psychiatrist, the psychologist, the speech therapist, the Occupational Therapist (OT), the vocational person...everyone...has to work from the Autism Spectrum Disorders (ASD) perspective (in our cases).
That has become once again very very clear for my son. Last year things fell apart everywhere. And the only places I could get help were panicked about the increased aggression so focused on that and forgot about his inability to understand and all of his sensory integration issues, etc... and life stunk. The aggression kept increasing because the treatment/behavior plans kept becoming more and more punitive.
So, I got him into as may new things as I could, a horse therapy program for kids with autism, a support group for brain injured young men where they hired a staff to use visual supports to help him to participate in the group from an Autism Spectrum Disorders (ASD) perspective, he enrolled in an autism center which develops social skills (next session is how to handle when things don't go as planned or if things are not going your way, taking another perspective)...he also has a one on one there since he was aggressive, but now after finishing his second session....all those that said he can't be with peers have toe at their words. I said over and over, if you go back to Autism Spectrum Disorders (ASD) programming, things will improve. AFter our first session he was getting lower marks for how he used his words, and several skills commonly hard for kids on the spectrum...by the end of this session they said he is actually a role model at times! It is so amazing to me and I could cry thinking of it.
He also switched schools and is in a program that has many kids with high behaviors but he is not in the autism program. They put him in the FASD program because they also use Autism Spectrum Disorders (ASD) strategies but have more flexibility for his brain injury....(he doesn't have FASD as a diagnosis and even though his social report pre adoption said his mom had been monitored even before she was pregnant with him, who really knows....still he had a brain mass and surgery and his symptoms more closely match that brain injury and FASD is a brain injury too). We had a glitch at the beginning of the year but since that first month, things have only gone up. He has days for sure that are not great, but overall, he is making progress both academically and in behaivor. (only two kids in the class, three adults and it is ahuge school, he does lots of vocational training and he is doing a stellar job in that area, huge self esteem boost)
He still has times at home he gets in my face, pushes me around but he has not been hurtful in his aggression for some time.
We also got a service dog for him in Sept. and after nearly not being able to go places in our car anymore due to his aggression, we now have almost no issues when traveling.
It sounds like you, like I have had the benefit of options of finding many services, for me, sometimes they ahve not been the most appropriate, but at least we had some help.
I fully agree our kids have no business being in the justice system. They would be killed, they could never figure out the social codes. And certainly they wouldn't learn much...much good that is.
For my son, I will be seeking guardianship so he can be in supervised placements in teh future. I can imagine that may be harder for you if your son fought it because he is not as cognitively delayed as my son. Cognition alone would not be enough for my son though because he is borderline. But I have been told repeatedly by doctors and legal advisors that his adaptive scores and medical history will mean that the judge will approve it.
Is that an option you are considering? It wouldn't have to be forever. Is your son going to go to transitional programming in school until 21 or is he going to graduate and accept his diploma?
I'm sure I didn't make a ton of sense here...feel free to ask questions. As IC said, most of us could fill a book with our stories. You have found a home for sure. It is pretty hard to explain how it feels to love someone, know they have some challenges that may make them not be able to control their behavior fully, but we still have to teach them to do better, and we still are human and feel angry at them when they hurt us. It is a weird life.
Many (not all) Autism Spectrum Disorders (ASD) kids can grow into happy adults whose disability is seriously lessened. This is NOT the case with all Autism Spectrum Disorders (ASD) kids, depending on how severely they are affected. One big mistake I think parents make is to put the main emphasis on psychiatric care when this is not a psychiatric problem, primarily. Then we get all sorts of psychiatric illness diagnosis. that are really just a manifestation of Autism Spectrum Disorders (ASD), but psychiatrists are not the experts in Autism Spectrum Disorders (ASD). My son was also dxd. with bipolar and every time I think about the three years of heavy medications and the wrong direction, I get angry so I try not to. He is NOT bipolar and he has learned, with interventions that relate to HIS disability, to be a very easygoing young adult who has a few differences which get better every day. He already exceeds everyone's expectations of him and is scheduled to move out next year. He will live in a Section 8 apartment where somebody checks in on him twice a week, but basically he will be taking care of his own needs, which is very capable of. The biggest issue for him is will he be able to get a job that is competitive in the workforce so that he can afford to live on his own. Although his IQ is in the normal range, his academic skills tend to be stuck at about sixth grade (which isn't that far behind MANY kids). He is a very hard worker and the jobs he's been sent on so far have been successful. Autism Spectrum Disorders (ASD) kids mature later than other kids, reaching their adult peak at 25-30.
Sonic will always be different because he is an ASDer, but he is honestly, along with Jumper, my happiest child. I chalk part of that up to his incredible "I never give up" spirit and partly I owe a world of thankfulness to t he wonderful professionals (NOT PSYCHIATRISTS...if anything THEY almost screwed him up) who helped him learn to live with Autism Spectrum Disorders (ASD). This would include his Occupational Therapist (OT), his PT, his social skills coach, his FANTABULOUS special education teacher who agreed to take him into her class even though his IQ was normal, my partner parents who belong to my Autism Spectrum Disorders (ASD) parents group, and his Special Olympics coach, where he learned more about being a "normal" kid than any regular team sport coach would have done for him. As everyone knows, not all my kids have done well along the pathway, and I am NOT bragging about my fantastic (cough) parenting skills. But I AM sure I did the right thing for Sonic. I think people's biggest mistakes with Autism Spectrum Disorders (ASD) kids is treating them as if they have psychiatric problems, trying to force them desperately to be independent before they are ready or even if they will need a little help, and not changing our parenting methods to f it with the Autism Spectrum Disorders (ASD) diagnosis.
Sonic banged his head on the floor, the door, anything, scratched himself, had monster tantrums and did many dangerous things when we first got him and we were NOT told he was on the spectrum...we were told he had ADHD/ODD. We didn't believe it and treated him as if he had Autism Spectrum Disorders (ASD). Today he is a very polite, kind young adult who has nice manners and is full of empathy. Yes, Autism Spectrum Disorders (ASD) kidds can have lots of empathy, but often they have trouble showing it. Sonic does not. He shows it. Anyhow, just my two cents about the best way to handle an Autism Spectrum Disorders (ASD) child, of course they are all different. And, again, I'm not bragging about my parenting...I screwed up badly with PastryChef and my oldest child, Sportsfan. But hub and I obviously were on the right track with Sonic, but part of that is Sonic himself and his "never give up" spirit.
Off my s oap box
Thank you everyone for your words and welcome.
Buddy - I totally agree with the 'selfish reasons' - it is comforting to know we are not the only ones dealing with these issues. It is just the norm of our lives, but when I talk to others about it, I know it must seem so far out there to them.
JKF - thank you - I am so sorry for what you are going thru - I read the other posts about your son coming back to NJ. My heart goes out to you. I feel like we are heading in your direction - but only time will tell.
Midwest - Regarding the medication - when G was in elementary school docs wanted to talk about medications and we refused. Then when he was in middle school and begun to be violent the same docs and others refused to consider medications. After several Mobile Crisis calls with police and local intervention, one social worker from a disability based school who had seen Graham on these crisis calls more than once, was at our house and said "how is G not on medication?" I remember feeling so dejected as we had been trying for two years to have someone pay attention and give us some help. He referred us to a doctor and at the beginning of 9th grade G started Abilify. This SAVED our lives. I do not believe he would be living with us, not in a residential facility or in jail without it. We went thru a variety of other medications until we were on a stable combination up through last spring. But several things always seem to happen. First, sometimes it seems like G's behavior is cyclical - the worst of the worst always being in the Spring. Second - he always seems to adapt to the medications. They work great for awhile and he plateaus - then their effectiveness begins to diminish.
Before G assaulted me last year I had promised my husband that the next time I would press charges - as at this point we think that to G meaningful life-altering consequences are just not truly understand. Once when hit hit me, he told me "Everyone gets hit in America - you deserved it for turning off my internet access". But as I stated - I decided to go another route - with the advice of the psychologist who had done G's most recent full assessment. I think the trip to the adolescent residential treatment facility shook G up. Of course he was beginning to identify with the victim's in his groups and the teams and we (his parents) made sure he understand he was NOT the victim, but the perp, so to speak. Everything to G is how he has been wronged by everyone. He spends so much time deflecting responsibility that he has made it an art. I think he rarely lets himself feel bad because then he would really have to look at his actions and behavior, take some responsibility and work on himself.
But I digress - the folks at the facility were very firm on G also being bipolar - which really did make a lot of sense to us. So in short - I feel like if he was not medicated, life would be even scarier and I am not sure where he would be at this point.
Interesting though with the deflection of responsibility that ends up turning into G shifting and recreating reality to suit his purposes. Last week during our most recent crisis, G said he must need more medication. Our response was - you are heavily medicated now and because of that you were able to turn the rage off after the incident after a few minutes. In the past you would have railed for hours or days. YOU need to work on the reason for the rages. Medication cannot fix everything - it is only a tool to help you.
We have been saying to him for over a year that we can only put all of the supports in place for him - but only he can accept them and work towards getting better. You can lead a horse to water.....
And for the record I think psychiatrists are a mean to the end - getting the medications. We have yet to see one that ever addresses the root issue. We now see a spectrum disorder guy as a family that has been very beneficial for all of us. But G also goes to an individual therapist and sees a social worker at school a few times a week. We are very open with all of the above on our daily issues.
In other news, tomorrow is what my husband and I are considering D-Day. It is our weekly Steve (Autism Spectrum Disorders (ASD) specialist) appointment. In this appointment/safe zone we will be telling G the plan:
A) Any other incidents between now and Easter, when he goes to IN to see his bio mom, he will stay there (he has lived with me and his dad in NY full time since age 6 as she could never handle him)
B) If he can keep the menacing, rage and violence together and follow the house rules - he can stay until the end of June when school is over - not sure if he will graduate - pretty 50/50 right now
C) Come July 1st - he is moving out. I have worked on setting up services for the past 18 months that hopefully will enable G to live in an apartment with a case coordinator in the area
D) if he does not get the services or if the services will not commence on July 1st - he will be moving to IN temporarily or permanently (depending on services)
Of course I am sure G does not think any of this is going to happen. I am sure he thinks he will go on living with us and treating us as he has always done, maybe take a class at community college, sit around un-showered perusing the internet and facebook and writing his music that no one will ever hear. He is a very talented composer of classical music and a violinist.
I still do not know how I feel about all of this. Last week's incident was different for some reason - a line was crossed that never has been and now I am afraid of him everyday - which breaks my heart. I love him so much but just do not know how to help him anymore. My husband is less forgiving - I think the line was crossed for him a few incidents ago and he is in such pain over all of this. He said (not for the first time) last week that he worries every night on the way home from work - when he rounds the corner he always expects the police with be there and that one day I might be dead. So for that reason alone, I am willing to try it his way this time.
Thank you - another LONG post!
Oh, hon, I don't think he shouldn't be medicated. Many Autism Spectrum Disorders (ASD) kids are medicated. It's just that many Autism Spectrum Disorders (ASD) kids also don't see anybody except psychiatric people...psychiatrist, psychologist, therapist, etc. and then they never get the Autism Spectrum Disorders (ASD) addressed because therapy doesn't help that. medications are a sometimes necessary evil, but they don't change the Autism Spectrum Disorders (ASD) mind either. And perhaps your son has more stuff going on than just Autism Spectrum Disorders (ASD). I have never understood how bipolar can be diagnosed without clear mania and depression...and this question came to me because of ME. I had that bipolar label on and off for years, but I really have a mood disorder and it's different. There is no clear mania and depression with me...I don't need a mood stabliizer...I have mostly depressive moods so I need an antidepressant, which I take and it works.
Often medications stop working. I've had that happen with myself. That's why medications alone is never the answer and they keep needing to be re-evaluated. I finally found such a good combo I've been on them for over twenty years. Only took me ten-fifteen years to find them...haha. However, I did not get violent either. Rageful, yes, but not violent.
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