Searching for Greener Pastures

[HopefulresignedMom]

Hi! This is my first time posting- found this site today and am overwhelmed- finally a place to talk and share and get help. Thank you all for your openness and willingness to be raw.
Our son is 12 now- since 3.5 we began to see changes in him- at 6 ADHD diagnosis, at 7 juvenile bi-polar and high functioning Autism Spectrum Disorders (ASD). Our journey has been one of intervention and a complete wrap of services since 7. We got voluntary Services as soon as we applied and our social worker has helped us to navigate the world of hospitalizations for suicide ideation, mania, medication clean outs and the nonsense of every doctor trying to undo the doctor before and change diagnoses. Our son has been on medications since 6- we have listened and tried everything, and had to deal with toxicity poisoning when one psychiatrist decided our teeny little boy should be on adult size doses of lithium. He has been home for just over six months after being in a residential program for 6 months. His latest and current doctor says he is an enigma- too capable to be autistic (bs), too young to be bipolar- and wonders if therapy is the best bet- because he manipulates and lies at school, but doesn't rage or use violence or destroy property. Our home is another story- he gets frustrated and verbally and physically assaults himself and the rest of us- he destroys property- and he harasses and tantrums. We have had 30+ hours weekly of ABA for 5 months and we do see improvement, but as soon as the therapists leave he is noncompliant and abusive. Our social worker says he has stopped improving with ABA and the next step will be us turning him over to them so he can go to therapeutic foster care and perhaps residential care.
He has anxiety and is aware socially which keeps him in check in the world and at school, but he has incredible difficulty with the social end of things. We need to get out of CT, where we live, and are looking for info from this community about their state and resources. I am exhausted, depressed and so broken about my beautiful son- he just can't seem to make the changes he needs to to be able to stay home with us. Our Marriage is at risk because we both know residential is in the future, but we don't want to call the cops or send him to the hospital for unsafe behavior- these options haven't served him in the past.

So where do you live and are you able to get respite and support for your child? I don't want to think about residential now, but if the emotional, verbal abuse continues and if he continues to be unsafe, we won't have a choice.

Thanks everyone-

 

[Littleboylost]

Welcome hopeful;

I have no experience to assist you but I do want you to know many will be along soon to provide support and share their experiences with you. you are not alone.

 

[ksm]

So sorry you and your son are thru all of this. I have no clue about state services...but I hope you will hear from others soon. I have heard that some states have waiting lusts for services.

Does your social worker have any suggestions? Maybe they hear from other people who had experiences from other states.

Ksm

 

[RN0441]

Hi

Welcome. I do not know anything about this either but I would suggest you try to get more information from your son's school. If they're not helping, just keep pushing.

I was a registrar at a high school for many years and I do know that when parents really push, they do get answers and help.

Good luck. I know this has to be tough. I never had behavioral problems with any of our kids. Just addiction with my youngest which ain't no picnic!

 

[JRC]

Hi Hopeful-

I also have a 12 year old son with ADHD and pediatric bipolar disorder. Please take my thoughts with a grain of salt, however, because my son's presentation is not like yours.

We live outside of Boston and have generally been happy with the psychiatric care our son has received. His doctor is a well-known researcher into pediatric bipolar disorder attached to a major teaching hospital. That is one of the benefits of living in Massachusetts. Access to excellent healthcare does exist here. But like everywhere it's expensive. It's just actually available. But you live in Connecticut. I imagine it is largely the same. You have access to Yale New Haven, Hartford and NYC hospitals. I'm surprised that you've had doctors tell you that he is "too high functioning" to be autistic or "too young" to be bipolar.

Schools: schools in Massachusetts are very good compared to the rest of the country. But I imagine, like Connecticut, they are very similar. We are in the process of placing our son in a therapeutic school because our public school isn't equipped to educate him. It's the best school system in the state yet they don't have the resources to give him an education. But, they will place him wherever we want. For our son, a therapeutic school is the best option, but not a great option. He's not a behavior problem, is compliant, and looks very, very typical. He just gets sidelined by overwhelming depression and anxiety. The hypomania is largely under control. So the therapeutic schools are a bit much for him but public school isn't flexible enough for him. Lots and lots of great options if you have a kiddo on the autism spectrum or with language-based learning disabilities. All private schools though so you could go that route or hope to get placed by the home school district. There are residential schools here that might be a great fit for your son if he is displaying different presentations at home and at school.

I hope I've helped! If you're interested in state social services I'm not as educated about that. We haven't needed to go that route. But my impression is that MA is a state with good services.

 

[susiestar]

I am sorry that you are going through all of this. A couple of things come to mind. First of all, I would suggest writing a Parent Report. This is a report that you write that tells everything about your son. You take it to every meeting and appointment. You keep it updated and you give his doctors/whomever whatever information from it or even part of the report that will help them treat your child. Or even the entire report. I found it was one of the most powerful tools I had because it cut out the whole "let's reinvent the wheel" part when switching doctors. I could say that we had already tried this or that and it didn't work, here are the results from doctor A, so let's try something else. The doctor couldn't say "Well, we don't really have those results, so we have to try it and see it fail again before we can move on". I found that having the prinouts of the lab reports in the Parent Report, along with my summary of how the medication worked and any side effects or whatever, really helped. It also helped that I could pull them out at a moment's notice during an appointment.

The format for the report was devised by parents who were here before me and it really works. Don't do it in one sitting, and keep updating it.

The other thing that I wonder about for your son is if anyone has addressed his sensory issues. Most people on the autistic spectrum have sensory issues. Their brain doesn't process what their senses tell them the way that normal people's brains do. If you have sensory issues, the world is "TOO". Too what? Depends on your sensory issue. Too loud, quiet, booming, shrill, stinky, not stinky enough, cold warm, almost any descriptor you could name, can be an issue for someone with a sensory issue depending on their sensory issue. Often it can feel like the entire world is attacking you and everyone around you looks at you funny because they don't experience the world that way.

Your son might have to work incredibly hard to keep it together and not have outbursts at school or in public. By the time he gets home he just cannot cope any longer. Then the family wants him to do homework and chores and family time and he honestly, truly, and quite literally cannot function. I don't know this for sure, but it could be the case. He may need his IEP to say that he has no homework because it is too much of a demand. We did that with my son at one point. I was NOT going to spend my every night dealing with a rage over homework. My son coped all day in school and he didn't need to do anything more at home. It was just more than he was able to cope with at the time. It made a huge difference. We also added help for the sensory issues.

You can get help for the sensory issues, if you have not done that. You see an occupational therapist for this. They do an evaluation and then give recommendations as to what will help. It can make a BIG difference.